Découvrir les récits sur la façon dont les troubles de la coagulation ont impacté certaines personnes et leurs proches
Le contenu publié sur ce site a été soumis par des tiers et n’est ni représentatif ou approuvé par la Fédération mondiale de l’hémophilie.
From Bleeding Knees to Changing Lives: My Journey as a Hemophiliac Humanitarian.
I still remember the first time I realized I wasn’t like other kids. At six years old, while my friends played cricket and other sports in the dusty streets of Chattogram, I had to sit on the sidelines. A simple fall would leave my joints swollen for weeks, turning my childhood into a cycle of pain and hospital visits. The other children’s nickname for me—*”Glass Boy”*—wasn’t entirely wrong. Like glass, I was fragile.
“You have hemophilia,” the doctors told my parents. But in Bangladesh in the 1990s, that diagnosis came with little hope. Factor VIII injections? They might as well have been made of gold for how inaccessible they were to families like ours.
My parents’ modest income disappeared into doctor visits and ineffective treatments. Factor VIII might as well have been moon dust. I remember one midnight in 2001, my father carrying me through monsoon rains to a clinic, my right elbow joint ballooned with blood. The resident doctor shrugged: *”Give him paracetamol.”* That night birthed two realizations: the healthcare system was failing us, and I would have to become my own advocate.
The worst nights were when the bleeding wouldn’t stop. I’d lie awake, clutching my swollen knee, trying not to cry because I knew it would worry my mother. She would sit by my bed, massaging my leg with warm oil, whispering prayers. “Allah is testing your strength,” she’d say.
One December night in 2019, I thought that test might break me. My knee swelled to the size of a football; the pain was so intense I couldn’t think straight. For eight days in the hospital, with no Factor VIII available, I drifted in and out of consciousness. The doctors warned my wife I might lose mobility in that leg.
But something in me refused to accept that. Maybe it was my mother’s voice in my head. Maybe it was the thought of all the other hemophiliacs in Bangladesh who faced this struggle every day. When I finally stood again after two months of recovery, I made a promise to myself: I would turn this pain into purpose.
I can’t forget that; the classroom became my battleground. While my body often failed me, my mind became my weapon. Between bleeds, bed rest, and hospital stays, I tried to bury myself in books. Many hemophilia patients in Bangladesh drop out of school – how could they attend when walking to class was a risk? But I was determined.
I’ll never forget hobbling into my study sessions for BBA, MBA, and MPH classes, taking exams on crutches, my knee wrapped tightly. The looks from other students – some pitying, some curious – only fueled my determination. “Let them see what a hemophiliac can do,” I thought. I submitted my thesis on time from my bed due to post-bleeding resting. My beloved wife laughed as she helped me balance my laptop on the bed. *”Most patients watch movies, listen to music, or are busy with their smartphones,”* she said. I smiled. *”I’m not most patients.”*
When COVID-19 hit and our family business collapsed, it felt like another cruel blow. But sometimes, life closes one door to open another. I found myself drawn to humanitarian work, first with USAID’s tuberculosis project, then with Prottyashi NGO’s migration project, where I was devoted to educating migrant workers female family members in rural communities in different upazilas of Chittagong districts on financial literacy and entrepreneurship development training, and after successful completion of this project, I was chosen by my organization to work for the forcefully displaced Myanmar nationalities named Rohingya refugees in the Cox’s Bazar Rohingya camp.
Standing in those refugee camps, teaching menstrual hygiene management, gender identity, gender-based violence, equality and equity, child marriage, and behavioral change to adolescents and their caregivers, I saw the same look I’d seen in hospital waiting rooms – the look of people who felt forgotten. It reminded me why I had to keep fighting.
The Work That Heals Me: When I met a hemophiliac, in any event, I looked into the eyes of young patients and their terrified parents and saw my own story. When I train, motivate, and inspire hemophiliacs and their parents, as well as medical personnel, on proper bleeding disorder care, I think of all the nights I suffered needlessly.
That’s why I dream of working with the World Federation of Hemophilia – because I know what it’s like to feel hopeless, and I’ve learned how powerful hope can be.
To Anyone Reading This Who’s Struggling:
“Hemophilia tried to take my childhood, my mobility, and my dignity. But it gave me something too – a fire to make sure no one else suffers as I did.”
“Your pain doesn’t define you. Your bleeding joints don’t limit your potential. I’m living proof that our greatest weaknesses can become our most powerful strengths.”
“Every time I walk into a hospital now – not as a patient, but as an advocate – I remember that scared little boy who thought his life would always be defined by bleeding. And I smile because that boy had no idea how strong he really was.”
Best regards,
A Silent warrior from Chattogram, Bangladesh
Md Tanvir Hossain Majumder (Severe Hemophiliac “A”)
My Name is Mohamad Abdulkader Lababidi. I was born and raised in Aleppo, Syria—a city once celebrated for its ancient citadels and bustling markets, now scarred by war. My life has been a relentless dance between two forces: “hemophilia”, a genetic disorder I inherited, and the chaos of a conflict that turned streets into battlegrounds. These twin struggles have shaped who I am, but they have not defined my limits.
“Living with Hemophilia: A Daily Battle for Survival”
Hemophilia in Syria is not just a medical condition; it is a life sentence. Simple acts—like brushing my teeth or climbing stairs—carry risks. A minor cut could lead to hours of bleeding, and dental treatments? Impossible. The lack of Factor VIII injections and doctors’ unfamiliarity with the disorder forced me to become my own advocate. At 15, I developed kidney stones. The pain was excruciating, but the “solution” was worse: outdated plasma transfusions instead of proper clotting agents. For weeks, I endured sleepless nights, clutching my side, while doctors shrugged helplessly.
Even diagnosis was a labyrinth. Blood tests contradicted each other—one day my Factor VIII level was 2%, the next 5%. “Which result is true?” I asked. No one knew. This uncertainty became my shadow, a constant reminder that my body was a puzzle no one could solve.
A Society That Sees Weakness, Not Humanity
In Syria, illness is a stigma. At school, teachers mocked my absences, unaware that a single nosebleed could hospitalize me. Classmates called me “glass boy,” whispering that I’d shatter if touched. The worst blow came during a history exam. I collapsed from joint pain, my knee swollen like a balloon. Instead of help, the principal accused me of faking to avoid the test. “Go home,” he said. “You’re a burden to this class.”
Outside school, the judgment deepened. When I confessed my condition to a girl I admired, her family forbade her from seeing me. “We don’t want sick blood in our lineage,” they said. Hemophilia, invisible to the eye, became a mark of shame—a secret I carried like a second skin.
War: When Survival Overshadows Everything
The war didn’t just destroy buildings; it shattered any semblance of normalcy. In 2016, a mortar shell hit our neighbor’s house. The blast shattered our windows, and shrapnel pierced my bedroom wall—inches from where I slept. For months, I studied by candlelight, textbooks propped against rubble. Universities, once my escape, became death traps. Professors fled; libraries burned.
Yet, in the darkness, I found light. With no access to lectures, I turned to philosophy. Nietzsche’s words—“What does not kill me makes me stronger”—echoed in my mind as I read by flashlight. Hobbes’ theories on justice fueled my resolve to study law. These books weren’t just pages; they were lifelines, teaching me to channel rage into purpose.
Hemophilia: The Unlikely Teacher
Pain is a harsh instructor, but it taught me lessons no school could. Chronic joint damage forced me to sit still for hours—a curse that became a gift. I devoured works on human rights, scribbling notes in margins. Marcus Aurelius’ meditations on endurance mirrored my reality: “You have power over your mind—not outside events.”
My eye condition, nystagmus, made reading a struggle. Words danced on the page, but I refused to quit. I memorized paragraphs, turning weaknesses into discipline. Slowly, I realized: hemophilia didn’t make me fragile; it made me relentless.
A Plea to the World: See Us, Hear Us
To the outside world, Syria is a headline—a blur of bombs and refugees. But behind the statistics are people like me, fighting silent wars. We don’t need pity; we need “action”. Factor VIII isn’t a luxury; it’s a lifeline. Education isn’t a privilege; it’s a right.
My dream? To stand in a courtroom, defending those whose voices are drowned by war and prejudice. To prove that a “broken” body can house an unbreakable spirit. My story isn’t unique—it’s a mirror reflecting thousands of untold struggles. See them. Hear them.
To read my full story in my own words here …..
https://drive.google.com/file/d/1ju0uwGxoApgy2cxVeGj8npXyMy2Tn4Yt/view?usp=drivesdk
And please Follow my journey on X (Twitter) here:
https://x.com/Mohamad15355791?t=ABhKC_G_01Q3c3i-wEvatw&s=09
Join me as I share raw, unfiltered truths about living with hemophilia in a war-torn land. Every word is a cry for justice.
My name is Muhiba Amir. I’m 18 years old. I’m a patient of VWD type lll .I am student of FSc Pre medical in Punjab group of colleges. I diagnosed with VWD when I was 6 month old and I had my severe nose bleeding. Also my father and sister have this disease so they already know about this disease
I had face severe nose bleeds and blood vomits after every 4 to 5 month till I was 13 years. I was always recovered when I got 13 to 14 bags of FFP and blood. My parents and family play an important supportive role in my life . Due to the support of my parents and family, I managed my studies along with VWD. My teachers was also very cooperative. Although it was too much hard to manage VWD along with studies but Allah helps me.
Now Alhamdulillah I enjoy a better lifestyle with VWD because I get too much awareness from hemophilla patients welfare society – Lahore.
Further I’ve big ambitions with VWD and InshaAllah I’ll complete my all ambitions with VWD .
Hi,
I am a young woman and I was diagnosed when I got my period with mild vWD type I and a thrombocytopathy. My doctor at that time was amazing. My first treatment didn’t work out fine, so I got other options. I felt secure and received an amazing treatment, inclusive a 24h number to call, when there was an emergency.
At my first appointment the doctor claimed all the diagnostic that was made was wrong and had to be retaken. I already had taken many tests at my old doctor before but I still agreed. After the tests they didn’t say my diagnosis was wrong but they didn’t say it was right either. They just sent me the outcome of my blood Tests without any Personal Explanation. When I asked for explanation, they didn’t answer at All. They just said, with my old and still current diagnosis I received the wrong treatment. They just Varied my first treatmentand claimed Ii should work by itself. I Tried to explain my Problems with my first treatment and Trier to Argue why I Would like to Keep my Modified treatment, that helped me a lot better but they denied It. And their only explanation was, that they don’t like to give that Kind of treatment. (I Researched IT later and Found out, that my treatment wasn’t unusual at all)
A few Months later at night, i thought I had a muscle bleed. I wasn’t Sure but the only emergency contact they gave to me, was the emergency room. They told me, when I go to the ER, everybody will know waht to do. I went there and nobody knew what to do. Nobody there had ever heard about the treatment of vWD or thrombocytopathy and they hat no idea how to treat me correctly. I called my old Doctor from my hometown and that was the only only who was able to help me after All.
That was a very long Story. My whole Intention telling it, was to Show that even in a medical well developed country where it seems that everybody hast access to treatment, still happens scenarios like I experienced.
The Girl Who Bled Hope
Life is no bed of roses; it is a profound journey marked by shadows and light, by trials and triumphs. Each path—whether smooth or stormy—shapes us in ways words often fail to express. Ultimately, it’s our own strength, choices, and resilience that determine how we walk this road. And so, here unfolds the story of my journey—each step etched with emotion, growth, and meaning, leading me to this very moment.
I am Midhat Khalid, currently pursuing my MS in Clinical Psychology, a field that mirrors the empathy and resilience I’ve grown up with. I recently graduated from Government College University, Lahore (GCU), but my journey began far before any degree—at just two years, when I was diagnosed with Von Willebrand Disease Type II (VWD Type II).
It all started with a fall from a window. I received stitches on my face, but the bleeding wouldn’t stop. That moment was more than just a physical injury—it marked the beginning of a life lived with extraordinary challenges. After a series of tests, my diagnosis was confirmed. My parents, unaware of such a condition and with no family history of it, were overwhelmed. We were introduced to the Hemophilia Patients Welfare Society (HPWS), Lahore, where I met Dr. Shahla, a guiding light who not only registered me as a patient but became a mentor through the most fragile years of my life.
Growing up as the youngest and third-born child in a nuclear family, I was treated with constant caution. My siblings lived freely, while I had to walk on metaphorical eggshells—every step measured, every activity weighed for risk. Being a girl with a bleeding disorder in a society that already puts limitations on girls was a double burden. While others were concerned with dolls and dresses, I was learning about infusions, bleeding triggers, and hemoglobin levels. I became my own caretaker before I even learned how to care for others.
From early on, I was a shy child. I avoided large gatherings, never indulged in late-night outings—despite being a girl, I never experienced the carefree joys associated with girlhood. But in the silence of solitude, I found purpose—in books, in learning, in my love for understanding the human mind. That’s what led me to psychology. Dr. Shahla once told my parents, “Never compromise on her studies. She has the thirst for knowledge.” And they never did.
I completed my O-levels and joined Lahore College for FSC (Pre-Medical). I kept my condition hidden, even from friends. Only one teacher knew. I didn’t want sympathy; I just wanted to live as normally as I could. But normalcy was elusive. My health would often intervene in painful, dramatic ways.
During college, I developed a habit of drinking cold coffee, unaware it would impact my health. The result was severe menorrhagia—my hemoglobin dropped to 5. Just before my pre-board exams, I was hospitalized. On January 1st, 2020, I was given a blood transfusion, and the next day, an iron infusion. That infusion nearly cost me my life—my blood pressure soared to 250, and I vividly remember jumping on the hospital bed, losing consciousness. For the first time, I saw death up close. That experience changed me. Since then, oral medications and monitoring my health have become part of my daily routine.
But July 2016 was a turning point—not in health, but in purpose. I began participating in HPWS workshops and meetings. I remembered what Dr. Shahla always said: “Never hide this disorder. Own it—it’s your special ability.” That was the moment I stopped seeing VWD as a weakness and began embracing it as a part of my identity.
I started working actively for my “bleeding brothers and sisters,” raising awareness, educating, and sharing my journey. Today, I’m proud to serve as an Executive Board Member of HPWS, an Executive Member of Hemophilia Foundation Pakistan (HFP), the Youth Leader of the Lahore Chapter, a National Youth Group member, and a representative for women’s groups both nationally and at the chapter level. Each of these roles fuels my mission to make life better for others like me.
Being a girl with a rare bleeding disorder in a patriarchal society like Pakistan comes with challenges few can understand. From avoiding sports to hiding sanitary products and enduring judgment for skipping classes or gatherings—every aspect of life becomes a delicate negotiation between pain and expectation. Society often views girls as fragile, but add a bleeding disorder, and you’re treated like you’re broken. I have had to fight for my dreams twice as hard—once against the limitations of my body, and once against the limitations placed by society.
But I am here. Still standing. Still dreaming. And still fighting—not just for myself, but for every child, every girl, every patient who thinks their condition makes them less than.
As a future psychologist, my goal is to serve not just minds but hearts—especially those who bleed in silence. My dream is to show the world that a person with a bleeding disorder can do anything. All we need is awareness, compassion, and a few precautions.
To those who live with rare disorders: you are not cursed, you are chosen. God gives the most sensitive hearts the heaviest burdens—not to break them, but to shape them into healers. We are here to serve, to feel deeply, and to light the way for others in the dark.
Never lose hope. There is always light at the end of the tunnel—even if you have to bleed your way through it.
Bleeding Disorders in Pakistan: A Struggle for Treatment and Hope
Pakistan’s healthcare system has long overlooked patients with bleeding disorders (PwBDs), leaving them without access to essential treatment. For years, individuals suffering from conditions like hemophilia, von Willebrand disease, rare factors deficiencies etc faced life-threatening complications due to the unavailability of Clotting Factors Concentrates (CFCs) in public sector infirmaries. However, the introduction of the Humanitarian Aid Program (HAP) by the World Federation of Hemophilia (WFH) after 2015 has transformed the landscape for PwBDs in Pakistan.
The WFH-HAP has been a game changer, allowing thousands of PwBDs to live healthier and with more promising lives. Before this initiative, many patients were left helpless, with limited access to even basic medical care. The availability of CFCs through WFH’s humanitarian efforts has enabled patients to experience a quality life which they never had before, reducing disabilities and preventing casualties.
Hemophilia Patients Welfare Society (HPWS) – Peshawar Chapter: A Beacon of Hope
Among the five active HPWS chapters across Pakistan, the Peshawar Chapter plays a crucial role in supporting PwBDs in Khyber Pakhtunkhwa (KP), which is more than 20% of the total registered PWBDs in Pakistan. The Province KP is located in the northwestern region of Pakistan, is known for its diverse cultural, geopolitical and uneven terrain. These geographical factors present unique challenges in healthcare accessibility, especially for women and girls with bleeding disorders (WGBDs).
The HPWS – Peshawar Chapter has been at the forefront of advocating for PwBDs, ensuring access to treatment, raising awareness, providing essential medical aid and most importantly, advocating its Women and Girls groups to speak for the cause. This group is leading by two prominent female with vWD while both having doctoral degrees. Despite the significant progress, the WGBDs are struggling hard to minimise such barriers to improve lives more prosperous and happier. It’s now imperative to provide opportunities for such young and educated WGBDs to participate in multidisciplinary training/educational events to enable them to acquire valuable knowledge and expertise regarding bleeding disorders, which they can subsequently share and implement at the local level, thereby fostering a positive impact within their communities.
As entire World will observe World Hemophilia Day on April 17, 2025, which is the dedicated year to WGBDs, it is essential to acknowledge the ongoing struggles faced by PwBDs while also to celebrate the progress made through initiatives like WFH’s Humanitarian Aid Program. It is time for the government to recognize its responsibility and take concrete steps to provide sustainable treatment solutions for PwBDs across the country.
“Access to treatment is not a privilege; it is a right. On this World Hemophilia Day, let’s commit to vanish gender-biased differences and to ensure healthcare for all, especially for WGBDs who have long been neglected.”
— Umar Khattak
Una frase que para mí es muy común es “desafiar lo imposible!” Hola saludos hemofílicos. Yo soy de Brasil. Todavía estoy aquí. Cuando tenía 2 años, el médico le dijo a mi padre que sólo viviría otros 6 meses. Antes de eso me había caído y me había cortado, y como ni siquiera los médicos de mi ciudad sabían de la hemofilia, sangré durante semanas. Un nuevo médico llegó a la ciudad, sospechó hemofilia, me hizo una transfusión de sangre de mi padre y me envió a la capital. Cuando mi padre le dijo a nuestro médico de familia que tenía henofilia, dijo que no viviría más de 6 meses. En aquella época era difícil, 1980 y este médico no sabía mucho sobre la hemofilia. Pasó el tiempo. Cuando las personas con hemofilia empezaron a infectarse con el SIDA, pasé años sin tratar las hemorragias por miedo. Adquirí secuelas en los tobillos, rodillas y codos. Cuando me gradué comencé a abogar por un mejor tratamiento. La presidenta de la Federación Brasileña de Hemofilia en ese momento era la Dra. Silvia Thomas. Luego Tania Pietrobelli. La lucha unida de muchos ha mejorado el tratamiento en Brasil. Hoy es un referente en el mundo. También es responsable de esto el Dr. Guilherme Genovez, quien fue Coordinador General de Sangre y Hemoderivados de 2010 a 2014. En 2004, creé una comunidad de hemofilia en Orkut y el blog Hemofilia News. Tuve muchas noches de insomnio, dolores, dificultades. Había acoso en la escuela. Pero me gradué y trabajo en el campo de la educación y también en la investigación. Trabajo como defensor de la causa de las personas con hemofilia y soy miembro de ABRAPHEM (Asociación Brasileña de Personas con Hemofilia). El blog sigue existiendo y también soy creador de contenidos. Ayudamos a mucha gente pero esto me ayudó mucho más. Somos más fuertes que la señora Hemofilia
I am a vwd type 3 patient and i am studying in university. I diagnosed vwd at the age of 7 and i think this disease is a strength for me to move in my life
My name is Atharv Pareek 9 years old, I have Severe hemophilia A type disease, due to this disease I am not able to go to school properly nor play with friends, I have to go to the hospital 4 days a week to take the factor VIII Prohylaxis treatment. By taking the reason of the factor, my joints are still fine, I have thanks to the Government of Rajasthan and the World Haemophilia Federation, due to which I get these medicines free of cost. If such a medicine is made, which is to be given only once a week, then how much relief will it be for me?
Thanks 🙏🙏🙏
Discover Marlene’s story as part of the World Hemophilia Day 2025 video series:
Hi, I am Marlene Beijevelt and I’m working in the hemophilia treatment centre in Amsterdam, The Netherlands. I think that women and girls with bleeding disorders deserve better care and more understanding and at least faster diagnosis.
In our treatment centre we’re testing girls as of six months who tend to have a bleeding disorder. We also work very intensively together with gynecology and have an outpatient clinic for women and girls with heavy menstrual bleeds. It is time to break the taboo and to ensure that symptoms are taken seriously.
Let’s work together to fight for equal access and care so women no longer have to suffer in silence. Their health should not depend on ignorance and stigma. Every woman and girl deserves the right care at the right time.
Discover Tatiana’s story as part of the World Hemophilia Day 2025 video series:
17 years ago, I gave birth to a baby girl suffering from severe factor 7 deficiency. From the moment our daughter was diagnosed, our lives changed dramatically. With little to no information about this very rare bleeding disorder, we started navigating a world that was unknown not only to us, but to the majority of healthcare professionals.
My daughter has suffered from joint, muscle as well as intracranial bleeds, not to mention having to deal with her menstrual cycle as well as chronic anemia. Frequent hospital visits, constant medical treatment and an ongoing state of alertness have become our daily routine. Although the last 17 years have been profoundly challenging, hemophilia has in fact brought our family closer. We have learned to communicate openly about our fears and celebrate the victories with great joy.
So for those of you in similar situations, please don’t forget that there’s always light at the end of a dark tunnel. Connecting with a larger bleeding disorders community has been a lifesaver for us. The constant support and their insights remain and have been invaluable. By advocating and raising awareness for equal treatment, I believe we can all make a difference. Let’s give these girls the care they need.
Discover Anupama’s story as part of the World Hemophilia Day 2025 video series:
Hello, this is Anupama, a member of the girls and women with inherited bleeding disorders committee of WFH. I’m from India and I have a mild deficiency of factor VIII. But I got my diagnosis only in my 30s. It’s very, very important to create awareness about the possibility of bleeding disorders in women because many don’t know about it. And it’s equally important to advocate for diagnosis, and access to treatment for women and girls as well.
In India, our NMO, HFI, has been advocating for the same and our women’s group has been conducting workshops and this years four regional workshops focused on women and girls with bleeding disorders as well.
So let’s create awareness about women and girls with bleeding disorders and advocate for proper diagnosis and access to treatment, globally.
Women and girls bleed to.
I found this page while searching about my hemophilia diagnosis.
My Name is Cindy Nogueras, 28, from Puerto Rico. Back in July 2023, while I was unknowing fighting for my life was diagnosed with Hemophilia factor XII also known as HAF deficiency, Hageman factor deficiency, Hageman trait. Factor XII deficiency is a rare genetic blood disorder that causes prolonged clotting (coagulation) of blood in a test tube without the presence of prolonged clinical bleeding tendencies.
It is caused by a deficiency of factor XII (Hageman factor), a plasma protein (glycoprotein).
The condition caused bleeding in my knees which has left me temporarily in a wheelchair, and stiff leg which can’t stretch due to the loss of the meniscus and cartilage.
This condition is also accompanied by agammaglobulinemia, which means I don’t have the protein which creates the immune system, and I will be having infusion for the rest of my life to treat it.
Although I Was mostly in and out of the hospital growing up, no one ever knew why, once I had a bad fall no one couldn’t tell me why my meniscus and cartilage were getting wear out. Until May 2023, I ended up in wheelchair with a bad pain and bad cramp from leg to knee, my rheumatologist sent me to emergency in suspicion of a sepsis on my knee.
I stayed in the hospital for about 19 days, 4 days in emergency room and 15 days up in a room, with many doctors and specialists visiting, from cardiologists, rheumatologists, orthopedics, hematologists, internists, immunologists and there they found my hemoglobin was in 4 and dropping, a bacteria in my blood, the hemophilia and the agammaglobulinemia.
Although I know neither have a cure, and will always be a part of me, I haven’t stopped doing what I love, I go to events of cosplay, work related events, and my photography hobby. Even if I can’t work now at what I got a degree on, I’m happy to be alive and continuing what I’m doing, with my family supporting me through this journey, mentally and physically.
health insurance doesn’t cover everything but we do everything we can to deal with it.
Yo bien agradecida con la lic.laura Paez y la doc.laura villareal de la clínica de hemofilia del hospital universitario.ya once años que mi hijo es atendido ahí ,es una excelente atención con su gran equipo multidiciplinario,nos han enseñado tantas cosas ,de como debemos llevar una buena profilaxis y poder nosotras mismas infundir a nuestros hijos.gracias a su atención podemos llevar una vida normal .
My name is Eliza VanZweden, and I am writing to share my journey as a woman living with Glanzmann’s Thrombasthenia. GT is a rare bleeding disorder caused by a platelet defect in which platelets do not aggregate to stop bleeding.
I was diagnosed shortly after birth in 1999, due to symptoms of birth trauma. My path to diagnosis was certainly more painless than others, as my older brother had already been diagnosed with GT. Growing up, I struggled with many nosebleeds which would often bleed for days. For these and other serious bleeds like throat and GI bleeds, I received many on-demand platelet transfusions in my youth. There are very limited treatment options for GT patients, who are often left to resort to platelet transfusions, Factor VII bypassing agents, or tranexamic acid. There are no prophylactic options available for GT patients currently.
As I grew, I learned about the risks associated with platelet transfusions – they should only be used to stop bleeding in emergency situations due to the risks of developing antibodies. This left me anxious – my only treatment option could become ineffective at any time and fail me in an emergency situation when I need it the most. The trust that all my bleeds will be solved with a platelet transfusion was replaced with worry surrounding every bleed and debating every time I bleed how much is “too much” before I go in for treatment – does a nosebleed need to last 8 hours before getting a transfusion? Or should it be reserved for one that is bleeding for 4 days?
As I transitioned to adulthood, I have recently faced my most challenging symptoms. My health is no longer only focused on my bleeding disorder, but also encompasses my bone, reproductive, and mental health due to long time suppression of periods using hormonal therapies. More recently, I suffered a thrombotic event which left me with a portion of permanent blindness in one eye. This experience, as well as my struggles to control my nosebleeds and menstrual bleeding has left me hypervigilant of how being a GT patient affects every aspect of my health.
Although I still struggle with knowing when to get treatment for severe bleeds and don’t have access to prophylaxis treatment, preventative care has still been key in managing my bleeding disorder. This involves minimizing my risks in every activity or environment, and being prepared for every situation.
The bleeding disorders community I have come to know through the World Hemophilia Foundation and the National Bleeding Disorders Foundation (NBDF) in the United States has proved to be an invaluable support and resource. I have met others who have the same bleeding disorder as I have and am inspired to be an advocate for this community <3
I have a child, named Aaron, who was diagnosed with Hemophilia A Severe, when he turned 1 year old in year 2010. He had an episode of intracranial hemorrhage at the age of 2, which almost cost his lives and along the way, had many joint bleeds episodes. At that moment in time, all the hospitals in Sabah, only provided On-Demand therapy.
I was fortunate to be able to communicate and gain knowledge from all the treaters from hospitals and universities, especially the hematologists. In early 2014, I had collaborated with a hematologist from the University Malaysia Sabah to organize a workshop for hemophilia patients in Sabah.
In end of 2014, I was approached by a strong advocate of hemophilia who is also the former President of Hemophilia Society of Malaysia and former Vice President of World Federation of Hemophilia. He encouraged and guide me the way to initiate and set up a Hemophilia Society within my region.
So, in the year 2015, I was involved in advocacy in the form of Hemophilia Society of Malaysia Sabah Chapter because I believe in the power of action to create positive change. Advocacy allows me to use my voice and influence to address issues that matter deeply to me, such as supporting individuals with hemophilia.
By actively participating in advocacy efforts, I can contribute to raise awareness, influencing policies, and fostering a more inclusive and supportive society for those affected by this condition.
Through advocacy in action, I can make a tangible difference in the lives of individuals with hemophilia, helping to ensure they receive the care, understanding, and opportunities they deserve.
I managed to establish a strong network of stakeholders ie.Ministry of Health(Sabah), hospitals(throughout Sabah and Kuala Lumpur), to ensure that the society stays updated with the latest advancements in hemophilia treatment and care. Through strong networking, it facilitates collaboration among the healthcare providers, patients, caregivers, and policy makers. It also increases the society’s ability to access resources.
As a 2024 SSMF Scholarship recipient, I will make the Hemophilia Society stands as a beacon of strength and hope, transforming lives and reshaping the narrative surrounding this challenging condition.
Hola mi nombre es Patricia naranjo y soy mamá de Diego Blankevoort de 7 años quien tiene Hemofilia A severa soy portadora de hemofilia mi padre tenía hemofilia y cuando nació mi hijo nunca imaginé que el podría tener y así fue desde un año que Diego usa la profilaxis el se inyecta hoy en día 1000 de liofilizado y nos a echo la vida más fácil y para mí niño la vida normal estoy muy feliz por su tratamiento ya que si el Diego se pone mal nunca debe de faltar a su tratamiento siempre al pie de la letra vamos hoy en día yo aprendí a inyectarlo gracias al centro de hemofilia del Hospital Roberto del Río y asus profesionales en especial ala doctora Verónica Soto la mejor doctora que le tocó a mi hijo y así vamos viviendo día a día su enfermedad se puede vivir en armonía y tranquilidad.
I am a mom of four beautiful children, with one having moderate Hemophilia A (however, he bleeds as a severe). He is my second youngest and most defiantly the most wild out of my bunch. From 7.5 years ago, when we found out Elias has hemophilia shortly after birth, life has has it challenges but most importantly its brought us into an amazing community that I cannot be grateful to be apart of.
When Elias was first born, we knew pretty soon after birth, that something was not right. He bled, and bled, and bled for days. We later were finally transferred to Vanderbilt Children’s Hospital where we found that he had Hemophilia A. What a day that really was. From being exhausted from having a new baby, to finding out that he has a serious condition, it really took a toll on me, as his mom. From that day though, I knew that I had to become Elias’ expert of his body and his condition because I was not only a mom now, but his advocate as well.
Early on, things were okay and we treated as needed. He started walking, and we had to have a few infusions from him falling and bruising that just would not stop growing. He started talking, and we had multiple infusions from mouth bleeds from him biting his tongue. When he was 2, we spent Christmas Eve in the hospital from an ankle bleed that we assume he got from walking on gravel (but who really knows). A few months later he got another joint bleed but this time in his elbow that we concluded had to of been spontaneous. At this point, I knew I had to stand up for him and decided that we needed to start on prophy because I could not deal with my son being in so many pain and treating afterward. After much fighting with insurance, he was finally approved to start emicizumab.
Emicizumab has absolutely been life changing for us. While I had never limited Elias from doing fun boy things, like riding his bike, jumping on a trampoline, doing backflips off the couch, riding a dirt bike, you know all the “fun” things that kids like to do, emicizumab sorta gave a peace of mind as well. Literally 3 months after his elbow bleed, he ended up breaking his other arm while in a bouncy house, ONLY MY CHILD RIGHT? LOL. We infused as a precaution but I really believe that because he has emicizumab, his injury was not worse.
Elias is now 7.5 and is NOT a poster child of Hemophilia. I let him do all the fun things that he wants to do (for the most part anyways). I fully believe that if I do not let him learn his own limitations now and let him “live in a bubble” then things will only get worst as he gets older. He plays baseball and is aggressive in his position and I think its great! He does not let Hemophilia define his life and I don’t either. Our life may be a little different from others, we may have to do things a little differently, but as a mom of hemo hero, my mind now thinks differently too.
We have started bringing awareness to our local community as well as bringing it all the way to Washington D.C. Nobody knows if they simple just don’t know. It is our job to bring attention to the matter and bring the awareness because I too, was one of those who had no idea that the word “hemophilia” meant. I love this journey that we as a family are now embarking. Elias is learning to advocate for himself, his siblings are also aware and are able to bring awareness to who around them too. Hemophilia not only affects the one who has it, but the entire family as a whole. We must support, advocate, and deal with it together to come out stronger and better than ever. Hemophilia will never stop Elias, it just may try to slow him down, but we are there to support and push him, because it will never win; we will not let it!
Dear All,
My name is Phyo Khant Kyaw, and I am writing to share my journey as a severe Hemophiliac with Factor-IX deficiency from Myanmar.
In 1998, I was faced with the harsh reality of my condition when a simple injury to my gum led to a diagnosis that changed my life forever. At that time, diagnosing Factor deficiency in Myanmar was a challenge, and I had been on a journey over thousand blood transfusions.
Despite the countless transfusions, my knowledge of hemophilia remained limited. When I became a member of the Myanmar Hemophilia Patient Association (MHPA), I was able to connect with others facing similar challenges, and together, we shared knowledge, experiences, and support that empowered me to navigate my condition with greater confidence and understanding.
One of the most harrowing moments of my journey was experiencing an intracranial hemorrhage during my childhood. I was engulfed by fear, unable to speak, and unable to see the light . However, care and treatment provided by Pf. Aye Aye Khaing, I got recovery within two weeks.
Until 2016, the absence of Factor-IX treatment left, resulting in deformities in both knees and my left elbow. However, in 2017, with the introduction of Factor treatment, a new chapter of hope began.
I am immensely grateful to the World Federation of Hemophilia (WFH), whose saving my life and the lives of countless others affected by this condition. Through their initiatives and advocacy, individuals like myself have been given a chance at life, hope, and a brighter future.
In closing, I extend my deepest gratitude to Pf. Aye Aye Khaing, the Myanmar Hemophilia Patient Association (MHPA), and the World Federation of Hemophilia (WFH).
With heartfelt appreciation,
Phyo Khant Kyaw
Terapeuta Hemato-Onco formada para peques con Hemofilia sin conocer que la vida me preparaba para atender a mi propia familia. Oaxaca-México
This is my Journey of living with Haemophilia.
When i was 11-year-old, there was great debate regarding my circumcision among the family. Elder members like my grandmother and uncles, remembering the death of my uncle due to non-stop bleeding, resulting from the circumcision as per the Muslim tradition in Sudan. My father, one of the admirers of Dr. Faroog Sidiqu, the reputed hematologist at the Khartoum Hospital, suggested that it is the doctor who would decide on it. My father was right. He could remember, the son was laying on the bed at that regional hospital, between life and death, bleeding for the third consecutive day. Doctors were puzzled and almost exhausted all options to stop this nasty bleeding from the nose. He took the journey from, after losing hopes, from Berber to Khartoum, not quite sure that his beloved son would make it. Dr. Faroog was in charge of the case. The child was admitted in the hospital, blood transfusions were made one bottle after another, and many tests were done.
– your son is confirmed to have a bleeding disorder, do you have any similar issues in the family? Asked Dr. faroog
-Yes, two of his uncles, mother’s brothers died at age of 9 and 13. Father replied.
-He is lucky to be born in an era that witnessed many improvements in the medical care of this clotting problem.
I was admitted at Khartoum Hospital for almost a week with the plasma infusion undertaken every 12 hours. the doctor assured there is a new medicine which would be a game changer in the lives of poor hemophiliacs. that was almost in 1971 when i was diagnosed and had my first treatment. My father and I came back to our home in the town of Berber, 360 Km north of the capital overwhelmed by the cheers of the relatives who presumed a miracle has been taking place and overloaded with many advice of the doctor on how to handle the case of boy. From that day i became a regular visitor to blood bank of Kh Hospital.
I went to the toilet, secretly wished to evaluate the efficiency of this medicine by myself. i was admitted because there was blood in my urine that lasted for couple of days. I came our rushing to my father, ” Yes, it is working dad, oh my God”.
What is working? asked my dad?
“The medicine” .i replied back………. “My urine turned to light yellow instead of red.”
it was a simple verification of the worthiness of the injected medicine. Color is changing from red to light yellow. i was stunned. my doubts turned into firm belief.
1976, i completed 10 years, with many self-awareness about the line that has been drawn. i sensed the attention of many eyes focusing on anything that i was doing. Playing football with my peers was a big taboo. I loved football and exhibited remarkable skills in playing. yet my friend would be very reluctant to let me play with them. They are afraid of the subsequences. At school the story was a bit different. The teachers were well informed about my case and warned that any physical punishment my lead to serious subsequences. I was very good at all subjects and topped the class. Not giving any teacher any reason to push me. Lashing the boys with whips was a common practice and the teachers were authorized to do it. when there a common punishment, the teacher would exclude me. some would make their own punishment for this strange boy. Mr. Amin, our math teacher, looked at me from face to toe and mockingly asked the class to stand up. it happened that i came late that morning and he was already in the classroom. He instructed the students to Welcome “His Highness” by singing the National Anthem. They did. He was so cruel to vent his anger in that way. i was down morally.
The same year, in the school holiday, my dad and i travelled to the capital by Half Express train. It was a privilege to travel to Khartoum, envied by my friends and give me times to narrate the wonders i have seen in Khartoum. They do not know that if it were not for this bleeding issues i would have never visited the capital. My wonder was that i had nothing this time to explain why we had to go to the capital. my health was great and no bleeding, being inside or outside.
The discussion was going on that morning with Dr. Faroog and some other big consultants providing more assurances to my dad that circumcision like any surgery would be efferently managed by the administration of the factor, factor 8.
Although i was cent per cent fit, i was admitted at the Pediatrics Section at the Hospital. Factor replacement was planned twice a day. My dad, noting the growing frustration inside me for being injected without a valid reason, he told me we planned to circumcise you. it is a simple procedure and there are no worries. I was a bit relived. Circumcision is something that relates to manhood in that closed environment. A man uncircumcised is not a man.
The day came. The news spread everywhere and our far and near relatives came to witness this “operation”. some of them, had no trust in the medicine at all, objecting seriously and surrendered to the will of my father who swear would never leave his son uncircumcised whatsoever. Three of the surgeons attended the surgery. Dr. Faroog set the hemostatic management plan with close monitoring of all essential parameters. After an hour i was pushed on a wheeled chair to the room. My aunts and other women ululated in joy. i spent around two weeks under the persistence of the medical team who left nothing for the chance. i was under the factor coverage for the entire period. Very minimal bleeding was observed. We returned to our hometown like a victorious army. when the train stopped at the station, we found a fleet of around 4 cars awaiting us. Celebration had to start and many cow blood were shed and many people were coming in to see the wonders, especially elders whom the occasion evoked their bitter memories of the earlier death of my two uncles.
Growing up was challenging, as I had to constantly worry about when my next bleed is going to occur. Being placed on on-demand treatment regime means, I had to experience bleed first before I receive factor infusion, and as a person with severe Hemophilia A, I was never short of 1 bleed in a week during my childhood.
Thanks to the advancement of treatment and care in Malaysia, I benefited from prophylaxis treatment from age 22 onwards which significantly reduced my bleeding episodes, and now I am able to lead a healthy and an active lifestyle.
I hope and pray (and will be working hard too!) that more PwBDs will be able to enjoy the best possible treatment and care towards better control and prevention of bleeds.
Happy World Hemophilia Day!
Hi there! My name is Francisco Antonio Calderón, and I want to share my story with you. At the age of 5, my life took an unexpected turn. While playing with my older brother, I had an accident that changed my life forever. I was diagnosed with hemophilia, a condition that affects blood clotting. At first, I didn’t fully understand the severity of the situation, but soon I realized that my life would never be the same as my classmates’.
Hemophilia prevented me from participating in sports normally and doing many of the things that kids my age did. I felt different and isolated. Sometimes, I was the victim of bullying by my peers, who didn’t understand why I couldn’t do the same things as them.
That’s when my parents decided to change my school. At first, it was difficult to adapt to a new environment, but soon I realized that this was an opportunity to start anew. I discovered that I had skills that my classmates admired, such as my ability to lead and motivate others.
I was elected president of the student council in my new school, and this experience changed my life. I learned a lot about leadership and discovered that I had the ability to inspire others and make a difference in the world.
After graduating, I studied a degree in Design, but I always had my true passion in mind: to help others who, like me, live with hemophilia. I started using social media to spread information about the condition and make it more visible to the general public. Today, through my Instagram account (@FactordeCoagulacion), I share my story and that of many others who live with hemophilia.
My ultimate goal is to study Journalism and create a foundation to help people with hemophilia in Chile. I know there is still much work to be done, but I am determined to make a difference in the lives of those who live with this condition. Thank you for listening to my story!
Spanish:
¡Hola! Soy Francisco Antonio Calderón, y quiero contarles mi historia. A los 5 años, mi vida dio un giro inesperado. Mientras jugaba con mi hermano mayor, sufrí un accidente que cambió mi vida para siempre. Me diagnosticaron hemofilia, una condición que afecta la coagulación de la sangre. Al principio, no comprendí del todo la gravedad de la situación, pero pronto descubrí que mi vida nunca sería igual a la de mis compañeros de colegio.
La hemofilia me impedía practicar deportes con normalidad y hacer muchas de las cosas que los niños de mi edad hacían. Me sentía diferente y aislado. En ocasiones, era víctima de bullying por parte de mis compañeros, quienes no entendían por qué yo no podía hacer las mismas cosas que ellos.
Fue entonces cuando mis padres tomaron la decisión de cambiarme de colegio. Al principio, fue difícil adaptarme a un ambiente nuevo, pero pronto descubrí que esta era una oportunidad para empezar de nuevo. Me di cuenta de que tenía habilidades que mis compañeros admiraban, como mi capacidad para liderar y motivar a otros.
Fui elegido presidente del centro de alumnos de mi nuevo colegio, y esta experiencia cambió mi vida. Aprendí mucho sobre liderazgo y descubrí que tenía la capacidad de inspirar a otros y hacer una diferencia en el mundo.
Después de graduarme, estudié Licenciatura en Diseño, pero siempre tuve en mente mi verdadera pasión: ayudar a otros que, como yo, viven con hemofilia. Comencé a usar las redes sociales para difundir información sobre la condición y hacerla más visible para el público en general. Hoy en día, a través de mi cuenta de Instagram (@FactordeCoagulacion), comparto mi historia y la de muchos otros que viven con hemofilia.
Mi objetivo final es estudiar Periodismo y crear una fundación para ayudar a las personas con hemofilia en Chile. Sé que todavía hay mucho trabajo por hacer, pero estoy decidido a hacer una diferencia en la vida de aquellos que viven con esta condición. ¡Gracias por escuchar mi historia!
My name is Rana Asad Ali, I am 19 years old and I have spent 19 years of my life with many difficulties. Once I got injured there was a lot of bleeding and at that time I did not know about hemophilia Then in 2016 my left arm bone was broken two operations were done, due to which I was bleeding a lot my family used to pay for the blood and due to the daily injury I could not even study properly I did intermediate and when my arm was operated for the third time someone told me about hemophilia and then I joined the hemophilia society Lahore and thanks to God I am fine till now.
I have inherited Factor V Leidon from my paternal line; my father has Factor V Leidon and activated Protein C deficiency, which he inherited from his father, which he inherited from his mother. All of whom suffered DVT’s at one point in their lives.
As a teenager, when my father had a DVT, I went to my GP and asked to be screened. When the results came back, I wasn’t told I had a specific “condition”, I was only told that my blood was “a little stickier than normal” but that it was nothing to worry about.
A few years down the line, it turns out it was something to worry about. It was when I was pregnant with my first son at the age of 20 that the midwife told me that I had Factor V Leidon. I would need to be consultant lead and would need to inject daily with Enoxaparin. As I had found out about the pregnancy quite late anyway, I didn’t start injecting until I was around 17 weeks. At 22 weeks we found that the baby’s growth was restricted due to lack of blood flowing through the placenta. At 24 weeks I was diagnosed with severe preeclampsia and admitted to hospital, being told that I wouldn’t be leaving until the baby was born. At 24+1 weeks, I developed HELLP syndrome and my organs started to collapse. I was given magnesium transfusions to protect my brain from any eclamptic seizures, before being rushed to theatre to deliver the baby. My platelets were so low that I was close to haemorrhaging. Our son was born on Christmas Eve 2014, at 24+1 weeks, weighing 480g. Despite being so premature, he was still much smaller than he should have been, indicating that the blood flow had been restricted for some weeks before I was diagnosed with preeclampsia. My life was very much touch and go for a few days; I wasn’t allowed to move out of bed, I was on large amounts of morphine and magnesium, having my bloods taken every 45 minutes to check my platelets (which were continuing to drop) and my liver enzymes (which were continuing to climb). I was getting worse before I was getting better. We had a very traumatic month over Christmas and the New Year, being transferred from hospital to hospital and surgery, all whilst I was still incredibly unwell and recovering from organ failure. Ultimately, our son’s prematurity resulted in his passing at 33 days old, on the 25th January 2015. We had some very difficult conversations with various specialists and made the heartbreaking decision to stop his life saving care, as everything that was being tried, didn’t have a good prognosis and it wasn’t looking likely that anything would be able to help him.
There is nothing for certain to say that the Factor V Leidon had caused the preeclampsia, however, there is a link. There is also nothing to say that beginning the injections any earlier would have prevented the preeclampsia and improved blood flow, but there is a chance.
It was decided that after such a risky pregnancy and complicated birth, any future pregnancies would be consultant lead from the very beginning. This put me at ease, slightly. I was told that I had no control over whether or not I get preeclampsia again because of the Factor V Leidon being a risk factor. Also, once you’ve had preeclampsia once, you are more at risk of it developing again. I was told that I just needed to make sure my body was as healthy as possible before I considered another pregnancy.
I overhauled my lifestyle completely to have another baby. I was in the gym, I was eating sensibly, and in the space of a year I had lost 5 stone.
It was now Spring 2016 and we decided we would try for another baby and I (very luckily) fell pregnant the same month. I was straight on the aspirin, folic acid, eating sensibly, still exercising lightly. I felt much better in this pregnancy and a lot more relaxed than I thought I would. My mother in law was a midwife, so I asked her to be my midwife, especially in those early stages. She referred me to a consultant straight away and a plan was put in place to begin Enoxaparin as soon as possible. We went away to visit family in Wales for the Augsut bank holiday, but the morning we got up to leave, I had stomach cramps and noticed a small amount of blood. I knew that spotting was common, especially in early pregnancy, so tried not to worry too much. The cramps didn’t ease off all day, despite painkillers. We weren’t planning on telling the family we were visiting; I wasn’t showing and was feeling good so knew that I could hide it for a few more weeks.
In the night, around 11pm when everyone was in bed, the cramps woke me up. I sent my husband to get me some painkillers and make me a hot water bottle. I was on my hands and knees in the bedroom, rocking with the pain. I’ve never felt anything like it. When my husband turned the light on, he says it was like a horror film. There was so much blood. I knew for sure that I was miscarrying. We snuck out the house around 2am, not wanting to explain anything to my family, and headed to A&E. Because it was the bank holiday, staff at the hospital were in short supply. I had wrapped a blanket round my bottom half, but the hospital was 40 minutes away, having to drive off Anglesey and to the mainland. By the time we got there, the blood had also soaked through the blanket. Triage could see what a state I was in so did get me seen pretty quickly. I was seen by a doctor, who didn’t need to explain much. They said I was likely miscarrying, but I would have to wait until the following Tuesday to be scanned at my local hospital. They told me to continue with the painkillers and to rest, and it would pass in a few days. By now, it was morning, and I had texts and missed calls from my family who had obviously woken and seen that our car was gone and wondered where we were. We got back around 10am and had to tell them what had happened. Not how we expected to reveal our pregnancy at all. But I was covered in blood, my clothes needed washing, I needed a shower, and I just needed to sleep and cry.
Again, it isn’t guaranteed that the Factor V Leidon caused that miscarriage, but there is a strong link. I also had to be monitored by midwife (mother in law) to ensure that I didn’t clot over the next few days/weeks. When we got home the following week, we went to the Early Pregnancy Unit at our local hospital, who did an internal ultrasound and confirmed that there was no heartbeat. As I was around 12 weeks along in my pregnancy at the point of miscarrying, it took around 3-4 weeks for me to pass the foetus and eventually stop bleeding.
We decided that I would give my body and mind a chance to rest and recover, so we put another pregnancy to the back of our minds. I started taking contraception again, for a few months. But then December that year, we felt the time was right. I fell pregnant again very quickly, but unfortunately, this time wasn’t meant to be either. Something just didn’t feel right. I had cramps again but knew that I was only very early, so they could have been implantation pains. But my pregnancy tests were getting weaker. I went to the Early Pregnancy Unit again, the day before my birthday. They did an internal ultrasound and confirmed that there was nothing there.
I was now 23, had one son who had died, and 2 subsequent miscarriages. I was told that they would only run further tests and investigations if I had a third miscarriage. The fact I had already lost a son preterm, didn’t matter. Again I was told that there is a link between Factor V Leidon and recurrent miscarriages and preeclampsia.
Only a couple of weeks after that 2nd miscarriage, I fell pregnant again. On Christmas Eve, our first son’s birthday. Because of my miscarriages, I struggled to enjoy this pregnancy. I pretended I wasn’t pregnant. I didn’t want to become attached incase I miscarried again. I carried on running, going to the gym, weight lifting, eating and drinking what I wanted, squeezing myself into jeans that didn’t fit because of the bloat. I didn’t tell my mother in law this time, because I knew that she was finding it hard seeing her son and daughter in law going through this, and she was having to stay professional. I made contact with the community midwife and was referred to a consultant straight away. I turned down the offer of early scans, with a view that, if something is going to happen, it’s going to happen and I can’t change it. I began Enoxaparin injections quite soon. I was doing everything I should have been doing to look after this growing baby, despite not wanting to believe it was there. But week by week, I was still feeling good. I was nauseous and tired, but that was all. I took this as a good sign, that my body was doing what it should be doing to help grow this little baby. I had a dating scan at around 13 weeks and sobbed when I heard the heartbeat and that baby was growing fine. This was probably the moment I started to actually think about having a real baby. Then the anomaly scan at 20 weeks, which is the scan I was most worried about. This was the point that we found out with our first that his growth had been restricted. But everything was fine. And every appointment I had with the midwife, there were no signs of preeclampsia.
We announced this pregnancy to most of our family at around 20 weeks, when I knew I was now at the halfway point and we had started to get excited ourselves. I was still very cautious of getting preeclampsia so was doing all that I could to avoid it; eating the right foods, exercising as I would normally, avoiding as many of life’s stresses as I could like not rushing around to get to places or worrying about things that didn’t matter.
This time, I got Symphysis Pubis Dysfunction at around 30 weeks, so was in a lot of pain. I stopped exercising and chose to swim instead. I was wearing a support belt and having physio. Eventually, at around 32 weeks, I had stop working as I was now just struggling to get out of bed. My blood pressure had started to creep up so was now being monitored daily, but there were no concerns about preeclampsia just yet.
At 34 weeks, the Braxton Hicks I th0ught I was having, suddenly got worse in the night. I called my mother in law the next morning, who had a gut feeling as soon as she arrived that something was happening, and she told me to go straight to the hospital. I didn’t quite appreciate the urgency so took myself off for a shower, my husband started building the cot “just incase”, I took something out the freezer for tea so we could cook when we got home later, and we arrived at the hospital at 3pm. I had no protein in my urine and my blood pressure was only slightly elevated, so they still weren’t worried about preeclampsia. The baby’s heart rate was monitored for 22 minutes before a consultant came to me and said “I think we need to bail out now”. His words exactly. Because the C-section I had previously was so premature, I had already been told that I would never be allowed to give birth naturally. And because of all my risk factors now and it putting too much pressure on my organs after the HELLP syndrome, they didn’t want my early labour to develop any further into active labour, so I would need to go for an emergency C-section now. The baby had been growing fine until this point and there were no concerns about him now that I was 35 weeks, but I should be prepared that he might need a little help and he is likely to be on the small side. I was warned of the dangers due to my previous obstetric history and of the Factor V Leidon and I was whisked down to theatre. Our baby boy was born on 19th August, 5 weeks premature, just 2 hours after being admitted to hospital. We named him Ezra Jude, which is Hebrew for “helper” because we knew he would be the one to help heal our broken hearts, and Jude was our first son’s name.
Whilst everything seemed to have gone well, we were monitored closely. I was put on antibiotics for sepsis as a precautionary measure and had regular bloods taken. Despite there being no concerns about preeclampsia and it looked like I had just gone into spontaneous early labour, the blood results showed that my liver enzymes were climbing and my platelets were dropping, which are 2 factors of HELLP syndrome. It is now thought that preeclampsia and HELLP syndrome was on it’s way again, but my body acted fast to get the baby out before it got too late again.
Ezra had severe jaundice and his blood sugars were low, so we were told we had to stay in for a few days longer than normal, until both our blood results showed improvements. Ezra was taken to neonatal intensive care for phototherapy treatment for his jaundice. The PTSD I had developed after our first son’s birth and death was triggered at this point. I was in hospital on my own (my husband went to work in the day whilst we were still in hospital) and my baby had been taken to NICU. I found myself detaching myself from my baby. When it came to feeding him, I just wanted to feed him and hand him back, not wanting to bond with him “just incase”.
Then I was told that he had an infection, but they didn’t know where it had come from. They were treating him with antibiotics and monitoring him, he needed a platelet transfusion and would need to stay in NICU. They asked to take blood from all of us and they were sending it off to specialists at Great Ormond Street Hospital for testing.
The results never came back in time whilst we were in the hospital, but the platelet transfusion and the antibiotics seemed to have worked. I managed to get his blood sugars up with what seemed like constant feeding, so they were happy to discharge us at 10 days old. He’d dropped a little weight and was now only 4lb 2oz but was doing well, so we went home at 10 days old, on the August bank holiday of 2017. Exactly a year to the day that I had miscarried.
Ezra had severe jaundice for a few months so we had several appointments with the hospital. He also had severe reflux which is common in preterm and small babies. At one of these appointments to discuss treatment for the reflux, the paediatrician told me that they had received the blood results back and they had detected that I had Anti HPA-5b antibodies, another blood condition. In short, my blood was not compatible with Ezra’s, so my body had begun to effectively fight off Ezra in the womb, which was why he was so poorly and showed signs of infection when he was born. My blood cells will attack these HPA antibodies if it comes into contact with them.
So with this 4th (and final) pregnancy, I began my Enoxaparin injections much earlier which may have been why I managed a healthy and much longer (although still preterm) pregnancy. If there were any future pregnancies, I would now also need monitoring to ensure that the Anti HPA-5b was not going to harm another unborn baby, and so that measures can be put in place in those later stages of pregnancy to ensure that we both have the right transfusions at the time that we needed a C-section.
Our little boy is now 5 and a half and is thriving. His prematurity and poor health in the beginning has had no effect on his development.
Myself on the other hand, am traumatised by not only the events of the last few years, but the treatment. I am constantly wondering if I had known about me having Factor V Leidon, would that first pregnancy have been any different? Instead of my GP telling me it was “nothing to worry about”. I know that Factor V Leidon isn’t anything to worry about on a daily basis, but it is something to worry about during pregnancy.
Up until very recently, my Factor V Leidon wasn’t a problem. I had to inject with Enoxaparin or Clexane if I went on a long haul flight, and take aspirin if I was going short haul or on a long drive. I know the importance of keeping hydrated to keep my blood thin.
At some point since Ezra’s birth, I have developed Cushing’s disease. Something incredibly rare (0.002% of people are diagnosed). This could be “just one of those things” however, it is the over production of the stress hormone, cortisol, caused by a tumour. There are links between Cushing’s disease and PTSD and over exposure to stress. Cushing’s also causes high blood pressure, diabetes, weight gain and increased risk of blood clots. So I now have another risk factor, on top of the Factor V Leidon.
Christmas 2022 I wasn’t well, overall for around 8 weeks, beginning in November. I thought I’d just picked up that nasty winter virus that seemed to be going round. Despite my PTSD and health anxiety always catastrophising any illness, for some reason, I tried to ignore whatever this was and just carry on as normal. Then in January 2023, one morning I just knew something wasn’t right and, although I still thought I was being dramatic, I rang 111. I had been having chest pain, I was coughing, but over the last few days, I was just really struggling to breathe. They made an emergency referral to A&E and told me to be there within the hour otherwise they would send an ambulance.
My husband took me in, and within minutes of walking through the door, I was on oxygen, I had an ECG, I’d had a Covid test, I was on IV antibiotics for sepsis and IV fluids, and I was being prepared for blood gasses and a CT scan.
Within just a few hours, I was diagnosed with “numerous severe and massive bilateral pulmonary embolism”. My lungs were apparently riddled with large blood clots. And a chest infection on top.
Every doctor I spoke to asked the same questions; have you been on a flight or long car journey? Is there a family history of blood clots? I had to explain everything, and they would read my extensive medical notes, and it would all make sense.
I injected with Enoxaparin for the first 3 days of my hospital stay. Eventually I began to breathe normally and I was taken off oxygen, and they changed the blood thinners from injections to oral tablets. I was kept in for 5 days until they told me that I was well enough to go home. I was petrified to go home, I begged them to keep me in. I was terrified that something was going to happen to me at home again; a hospital stay had been the biggest trigger of my PTSD in a very long time, and I really didn’t know how I was going to drag myself out of this mental low that I had found myself in. They explained that the blood clots would take a few months to dissolve, I might still experience some chest pain and some coughing, but that I was on a high dose of blood thinners and it’s highly unlikely that I’m going to form another clot whilst I’m taking them. They had to remind me how I poorly I was when I first went in, and how much better I’d got in the 5 days. They sent me home and just told me to rest.
Now, 3 months later, I’m still on that high dose of blood thinners. I still get the occasional bit of chest pain and I have to remind myself that it’s normal, rather than convincing myself that it’s something sinister. I will have a scan on my lungs in May (4 months after the clots) to see if they’re still there. Depending on what that scan shows, they may be able to reduce my dose of blood thinners, but regardless, I will be on them for the rest of my life now. If the scan shows that the clots have gone, my treatment for Cushing’s disease can also resume and hopefully they will book a date for the surgery to remove the tumour (surgery was always the plan but having a PE put a stop to it!).
Whilst I always thought that having a clotting disorder wouldn’t be a problem day-to-day, it has proved over the years that it is going to be a problem. I will have to take blood thinners forever; I carry alert cards around with me, just incase something happens and people need to know how to treat me; I struggle to get life insurance and travel insurance.
All for something that I inherited, and is completely out of my control, no matter what kind of lifestyle I live.
“Hope is being able to see that there is light despite all of the darkness.”
Life is not a bed of roses, it is a journey where one has to pass every dark, shiny, rough, and tough path. It depends on an individual how one goes through this journey. Here begins my journey to this date.
I am Midhat Khalid currently doing BSc in Psychology from Government College University, Lahore (GCUL). I am patient of Von Willebrand Type II. I am the youngest and third-born child of my nuclear family. I was diagnosed at the age of 2 with this disorder when I fall from the window. I got stitches on my face but still, it bleeds. At the suggestion of the doctor, I got tested and was diagnosed. Then my parents took me to the Hemophilia Patient Welfare Society (HPWS)- in Lahore. Here I met Dr. Shahla and got registered here as a patient. As a child with a bleeding disorder is not an easy task especially when your elders are normal children and you have no family history of this disorder.
Since my childhood, I was given extra attention and protection. Being a girl with moderate VWD means, I had to take care of myself at every step. Dr. Shahla always asked my parents to not compromise on my studies as she saw my thirst for studies and knowledge. Since my childhood, I was a shy child who avoids gatherings, late night shopping ( though I am a girl) and always indulged in studies. I did my O-levels and got admission to Lahore College in FSC Pre-medical. Throughout my schooling, I tried my best to not get injured. Only one of my teachers knows about this condition and even I hide this disorder from my friends.
In my college, I used to drink cold coffee so much. As a result of which I got severe menses and my HB dropped to 5. On my last pre-board, I got treatment. On 1st January 2020, I was infused with blood and the very next day with iron. Iron reacted and my blood pressure shot to 250, I was jumping on the bed and there I can say I saw death closely. I was given anti-allergy and after hours I became conscious. From then oral medication for maintaining Hb becomes part of my life.
July 2016 was the turning point for me. I started to participate in meetings and workshops of my society. Dr. Shahla always says that every patient should own this disorder, and never try to hide it. It is our special ability from god. On following her saying, I started to work for my bleeding brothers and sisters. Now I am confident enough to tell everyone that I am a person with a bleeding disorder. My engagement in society increases and now, I am an Executive board member of HPWS, I also got elected as an Executive member of the Hemophilia Foundation Pakistan (HFP), a Youth leader of the Lahore chapter, a youth member of a National youth group, representative of the Lahore chapter on national and chapter level women group. In all these achievements and struggles my parents and siblings are always by my side.
As a psychologist, I also want to serve my society and do something for my blood brothers and sisters. I have a high ambition to serve humanity and will try my best to do something for my country. I want to make my parents proud and fulfill their wishes and dreams as all my success is just because of them. My dream is just to show that a person with a bleeding disorder can do anything all one can need is just precautions.
In the end, I just want to say we should not feel it as a burden and curse from god. God makes us special as he selects us to serve humanity, he wants us to become aware of the pain of humans, and how to become one in others’ pain. All we need to learn is never to lose hope as there is light at the end of a dark tunnel.
Happy Hemophilia Day!
“No matter how long the night is, the morning is sure to come”
I don’t know how to right a story but I will share my short story in my own words. In my point of view hemophilia is the same life with extra hard struggle, which gives you extra skills, extra strength and extra patience. In my birth my parents knew that I have some weird abilities hahah yeah joke! Which ruined my whole childhood.
After all those historical Lockdown days of the world, people understand how you feel isolated in your schools, in your home, in your Eid/Christmas. That’s what I feel for past 15 years of my life with Deficiency of Factor VIII. But in hemophilia’s isolation gives you strength and safety, which prevents Joint Deformity. That’s what I learn!
I remember the night when I was 14, crying a whole night because of severe knee bleed. My father tried every game to change my mind from the pain but nothing worked! And hopelessly said Son: I can not take your pain! And literally he tried everything but “No matter how long the night is, the morning is sure to come”.
After all those non aware years of hemophilia I heard about some hemophiliac communities which are working on hemophilia . I start searching about these communities which are working for themselves. And then I met someone in 2013 who said I have some planes. And we start building a hemophiliac team and then we start monthly meetings, awareness and advocacy with government and government hospitals. I got the first Factor VIII injection from our HTC in 2014. Then finally I got opportunity volunteer on both National/International. Currently I am working as a National Youth Group Member of Hemophilia Foundation- Pakistan.
I got the fully funded scholarship for BS education in 2017 and after four year I completed my Bachelor degree in Agriculture.
MY PASSION FOR HEMOPHILIA
One and a half decades ago, my son was born (now 16yr old, a high school student). He grew up like any other boy in good health until when he sustained an injury to his upper gum while chewing sugar cane. It was a horrible experience before my son could recover back.
Since his birth, her mother could discover unusual lump swelling beneath his skin as she applied jelly to his skin. At times she could accuse her elder sister of bullying him when she is not around. I remember one day giving corporal punishment to my daughter for these allegations from her mother. The issue of his swelling came to our attention when he developed a larger swelling on his belly that gave us sleepless nights. By then l had acquired an internet-enabled phone which l could google and check for possible causes.
I remember landing on an article that directed me to the Facebook page of a certain Indian guy who was trying to talk something about Hemophilia and its symptoms. His article made a mark on my mind and from that day l started doing a lot of research to know more about what could be ailing my son.
It was until when he got an injury on his gum that the journey to face and know hemophilia started. The day this incident occurred, l and my wife were around and we took an assumption that, as usual, his bleeding would stop. Her mother could wipe the oozing blood from her mouth without paying attention to the continued bleeding. After dinner in the evening, her mother carefully laid him on his bed.
The night was as usual until 6 am in the morning when we discovered bloodshed in his beddings. It was horrible! His face was full of blood and he could not talk because blood had clotted in his mouth making a “lump” making it impossible for him to talk. With the little wisdom we had, we managed to extract that lump of blood from his mouth and opted to take him to Kakamega General Hospital where he was examined and we went back home with sylate tablets as prescribed by the clinician.
Things didn’t work, the following day, it was much worse and we resolved to go to a private hospital where he was hospitalized for being anemic. On the fourth day of his hospitalization, l received a phone call that urgently required me to transfer my son to Kisumu for a blood transfusion, by then l was at my place of work. May God bless Dr. Kedaha for this quick conclusion. Before we could leave the hospital, the doctor gave us a transfer letter to Obama children’s Kisumu JOOTRH that called for a coagulation test to show the clotting time of my son’s blood.
At Kisumu, Obama children were another nightmare to get blood for transfusion. It was then that l came to learn that, donating blood voluntarily is more important. I had donated blood at Kakamega before leaving but unfortunately because of the condition of my son that required urgency, the blood could take more time for screening for it to be ready since there was none at the blood bank.
My son situation continued to worsen, her mother had no hope, but God never fails. It was on Thursday morning when a team of doctors and medical superintendent were on a normal routine checkup for patients, came across my son and a madam in civilian with a label on her chest “Med sup” went through his file and inquired why My son hand not been transfused with blood. The conversation that followed was if l has ever donated blood voluntarily. My answer was that l donated blood at Kakamega for my son a statement that irritated her mind. “you are selfish, when people volunteer to donate blood … you feel it is a waste… now whose blood do you want to be given to your son…? “These words were too harsh for me considering the situation of my son. But finally, my son received blood in the evening, and his eyes that had stayed closed opened.
This gave us hope as we struggled to let him bite his favorite fruit sweet banana. A few days later, we have discharged with a clarification that my son’s clotting wasn’t normal. We were then referred to book a clinic near our residence of which we opted for Dr. Kedaha’s clinic, who later referred us to Kenyatta National Hospital where my son was diagnosed with hemophilia A severe. My son resumed his normal health gradually although his memory was affected such that he could not name objects and understand simple instructions at the age of five for 6 months. Briefly, he has undergone a lot of external and internal bleeding. His school life has been on and off because of bleeding.
Access to treatment has been a challenge whenever he gets an injury. The nearest treatment center for care for Hemophilia was only at MTRH Eldoret which is 100 km from our residence. Doctors, clinicians, and nurses have played a big role to educate us about home care and self-infusion. His first prophylaxis was when he had a swelling knee. He could not walk nor stand, but the following day after prophylaxis my son walked although with the aid of support.
Factor as treatment product has been the main alternative to his bleeding both external and internal. By prophylaxis, his circumcision was successful at the age of 7 years. The year 2021 after developing inhibitors, he was introduced to Hemlibra treatment product that is more effective than factor. Hemlibra has really changed his life by reducing the multiple bleeds he used to have. This has enabled him to attend classes regularly and likewise reduced the cost of treatment and uncured expenses.
With the changing world and technology, we hope one day, gene therapy that is more effective will reach every hemophiliac. As a caregiver, we appeal to our government at the local and national levels to consider budgeting for treatment products for hemophilia patients.
My name is Mosongoh, a Kenyan man aged 43 yrs. I have hemophilia. I was diagnosed when I was 3 years old, and ever since then, it’s been a constant presence in my life. Hemophilia is a genetic disorder that affects the blood’s ability to clot properly, which means that even a small cut can be dangerous. In Africa, this condition puts a person affected with hemophilia in very dangerous situations, due to cultural beliefs. Growing up, I had to be really frustrated most of the time the community did not seem to understand why I had to bleed profusely with a small cut, and in school, it was not any better.
My mother made sure I didn’t do anything too risky while my father did what to have anything to do with me, she had to take me to the hospital every few weeks to be transfused with blood and this made to be known as a village blood drinker, I was not allowed to play with other kids in our neighborhood as I was referred as a breeder one by the parents of my friends in the village.
Despite all the precautions, I still had some close calls. My joints started to have internal bleeds. One time, when I was playing with my little sister, I accidentally fell down and started bleeding heavily on my forehead. My parents had to rush me to the hospital, where I got surgery and a transfusion of blood.
As I got older, I started to feel really frustrated with my condition. I couldn’t do the things my friends were doing, like playing sports, having girlfriends, or attending village parties. I also had to be really careful about what I ate and drank since certain foods and alcohol could interfere with my clotting.
But over time, things have improved since the World Federation of Hemophilia started to donate factors products. I have learned to adapt and cope with this condition and I have found other things I’m good at, like playing chess. I have started to realize that having hemophilia had given me a unique perspective on life. I know that every day is a gift, and I have learned to appreciate the little things.
Now, as an adult, with my dear wife Daphine my daughters, Laurie and little Anne I’m grateful for the life I have. I know that hemophilia will always be a part of me and my family, but I also know that it doesn’t define us. I’m more than my condition, and I’m proud of who I am.
For now, our government has not given any commitment to provide medication for persons with hemophilia. Hopelessly have no space in my heart. The future of hemophilia is bright.
I am Ben Maoga Mosongo,34 years old, a Kenyan who has moderate Hemophilia A. Professionally am an electronic mechanical. I was elected to serve as the executive board member of the Kenya Hemophilia Association (KHA) where I represented patients with needs.
To me, Hemophilia is life-threatening with all I have experienced. I have gone through a lot living with hemophilia, and sometimes am in denial. Today I have a pseudotumor that has really affected my capacity to execute many functions. Am not sleeping like other normal people due to the location, size, and pain from the pseudotumor. Most of the time I sit till morning and my life is full of distress, can’t walk or stand for a long time.
In old times, we were in darkness because accessing health facilities with the capacity to offer hemophilia treatment was a nightmare. We used to travel long distances for medication and by then the only treatment available was fresh frozen plasma and cryoprecipitate. Sometimes our parents paying attention to our health needs was inadequate due to other competing demands resulting in deformities. The most challenging thing is sometimes you feel rejected by friends, only a few stick around, and those who have gone through the same journey. My kids always ask me when will I walk like them. What really happened daddy? and many endless questions.
Nevertheless, I really thank God because there’s a relief that there is access to factors and other treatment products that we use to manage bleeds and relieve our pains. This has been possible through goodwill from well-wishers like the World Federation of Hemophilia (WFH) who donate factor products to Kenya. Currently am using crutches as the pseudotumor on my left side has really brought so much stress on my movements but with the continued prophylaxis with factor VIII, I hope it shrinks to an operable size.
God is so great because my family is always encouraging me. I also thank God for my physician and nurses for being there with me all through and helping me cope. Am hopeful I will get well soon. My wish is for the government of Kenya to recognize the needs of people living with Hemophilia and enhance access to treatment.
Today, allow me to go down memory lane and narrate about a condition that changed the trajectory of my life as a father- a caregiver.
I had been uninformed about Hemophilia until 2009 when I set foot at the doors of Kenyatta National Hospital where I got enlightened on Hemophilia. This was the day that not only proved most fruitful along the lines of seeking medication for a ‘disease’ (so we thought), that we didn’t have a clue about but also the day that I knew that my sons’ bleeding condition was neither a disease nor a curse but a manageable bleeding disorder.
Since 2004 when my third-born son (Now 20yr old) started showing symptoms such as swelling of joints and rampant nosebleeds life hasn’t been quite as usual. The case doubled in the year 2005 (Now 18yr old) when we were blessed with another child who was hemophilic. Frequent visits to and from the hospital started becoming a norm to the extent of absurdity let alone the constant fear of my two sons losing their lives to Hemophilia. (Both of them have Hemophilia A)
Because the two hemophilic kids had to constantly play regardless of their being vulnerable to bleeds, most of the time they came back home either bleeding or with swellings. This meant that their siblings, mother, and I, had to find ways to stop the bleeding or suppress the swelling which at times translated to less sleep or no sleep at all.
Back then, factor was something unheard of and the use of crude ways to stop the bleeds seemed to even worsen the symptoms. I remember even rubbing a hot wet towel around a swelling with the intention to reduce it. Little did we know that we were making it worse instead.
Compounding the reality that a lot more ground on Hemophilia in Kenya had not been uncovered, many cultural norms and practices added insult to the injury we already had. The never-ending prejudices from neighbors and the community that insisted on primitive courses of action pushed us as a family to the edge. Some even went to the lengths of terming us as a cursed family.
This notwithstanding, we trudged on as a family nursing our hemophilic sons and siblings. However, we had to live with the truth that whenever one of them got injured they had to pause their education and stay at home until the day they recovered. Such a case came in the year 2008 when Allan- the second hemophilia son had to stay at home attending to his swollen knee for a whole year without access to education or proper treatment.
Fast forward to the present times, tables have turned and life has become even more bearable, to say the least. Thanks to easy access to medicine, hospitals, and even a community of hemophilic families that can lend a shoulder to lean on. With organizations such as the Kenya Hemophilia Association and the World Federation of Hemophilia coming to our rescue, we rest assured that the provision of factor products will always be within our reach.
Today, it is safe to say that periodic hospital visits, hefty costs of transport, and missing school just because of a minor bleed are now something of the past. This is because home-based treatment is now common as the two hemophilic kids can administer their prophylaxis treatment even without the help of a doctor. This has cut a lot of costs such as maintenance and transport costs which certainly had an impact on our living standards as a family.
That we are headed for promising times in the near future is clear from the decibels of modern technological advancements, medical development, and a great deal of financial support alongside the availing of medical infrastructure concerning Hemophilia. Yet, despite these advancements, some underlying concerns can be taken into account for a better tomorrow.
A good start would be training other affected members of the family on how to handle their hemophilic siblings such as administering prophylaxis, how to handle bleeds and even ways of treating nosebleeds. These can be made through online training and education amongst other channels.
Along awareness lines, in my view, the hemophiliacs themselves besides their siblings can be a conduit for mass awareness of hemophilia and its effects. This is because they are the ones affected firsthand. Armed with the knowledge they have acquired over the years; they stand a chance to be upfront in the battle of ending deaths accruing from this bleeding disorder. Perhaps this is the surest way to bridge the gap between the already known and unknown hemophilic in the whole world. Who knows?
Furthermore, the provision of guidance and counseling to the affected family members will also go a long way in the reduction of depression caused by constant witnessing of the agony that hemophiliacs go through. To be frank, as a father, I have seen the effects of agony spread all over the family members whenever one of the hemophilic kids gets injured or gets hospitalized.
Moreover, with the utilization and availability of technological instruments such as laptops and smartphones, families can now be virtually assisted whenever an injury occurs without necessarily visiting the hospital.
In retrospect, comparing how life is now with long before we got enlightened, I consider it a blessing to have known the bleeding disorder at the opportune moment. Life now is snug and above all, knowing that my two hemophilic sons are going to readily access treatment gives me a sense of serenity. Many thanks go to all organizations and friends that stood by our family in combatting hemophilia and its effects. Surely, the synergy that has been in play has borne fruit in the long run!
My name is Dennis Rutto, I have severe hemophilia A. I was diagnosed with the condition in the year 2012 after I had undergone circumcision. Early diagnosis was missed due to a lack of knowledge among my parents and the community at large. Having the kind of health issues I had was considered a curse, which resulted in a lot of stigmatization, disability in major joints due to lack of proper treatment, and seclusion. Since my diagnosis, I have been receiving factor infusions only on demand as we do not have enough factor supply for prophylaxis as a country, and through this, I have seen a drastic change in my bleeding episodes, reduced pain and suffering, and a dramatic drop in the number of times I have needed hospitalizations. Overall, my quality of life changed for the better allowing me to be an independent young man with a Diploma in Health Records and Information Technology working with the Ministry of Health. My prayers and wishes are that the government and other partners work together to provide access to essential hemophilia treatment products in the country to support both on-demand and prophylaxis in line with enhancing universal coverage and treatment for all.
“Being a hemophilic is just a matter of adopting a diverse lifestyle that is more protective and safe”
Growing up in a developing country with Hemophilia meant more than discomfort, pain, and disability to me. I remember the times spent lonely at home, away from friends. At times, friends were reluctant to include me in games due to the fear of the disease that I would end up with an injury or a severe bleed. During childhood, my playtime was well guarded, excluding me from all school/extracurricular activities. I felt deprived of my entire childhood and it gave me an inferiority complex. Growing up as a teenager was not easy either.
The social stigma that surrounds Hemophilia has adverse effects not only on the patients but also on their relationships with family, friends, and colleagues. As the disease progresses, It can cause a condition of caregiver burnout for the family members, and they may also be affected by the stigma often attached to the disease. I was diagnosed at the age of 14 months with hemophilia “A” [severe factor VIII deficiency]. In the early 1980s, there was nothing much to treat my condition except FFPs [fresh frozen plasma] in Pakistan. Because of knee damage, I needed a leg brace by the age of ten and depended on crutches and a wheelchair at different times. I give my parents great credit for teaching me that life is manageable and I was never allowed to feel sorry for myself. I’m so blessed to have a caring wife and a lovely daughter.
Later at the age of 12, I was tested and got positive reports of co-infections. My physician and my father decided not to disclose the results of the test. I was quite young to digest the details. At the age of 22, upon knowing my status of co-infection, the whole world collapsed around me. Hopes were shattered and life seemed to have come to standstill. My friends started avoiding me and my workmates preferred not to interact frequently. I visualized several things to suppress the reality until finally I surrendered myself to Allah. First question that came to my mind was “WHY ME?” Then I looked for answers; “Allah only burdens those capable of bearing the burden”. I have gone through many trials and surely there is a reason…Allah tested me. Then I read a verse from the Holy Quran; trials given to people are commensurate to the courage they have. Rather than being sad, I felt proud. Living with a chronic disease along with Hemophilia teaches you how to persevere and cope with adversity.
Having transcended my fears, with the belief that the future lies in Allah’s hands, I live each day positively and with the courage to face the uncertainties and complications sourced by Hemophilia and my co-infection. I have seen life as not as simple as others have; the challenges I faced have given me the resolve to not only help myself but also others. In my teenage; I decided to volunteer for the hemophilia cause by joining the local Hemophilia Society in 1998. I’m currently serving Hemophilia Foundation-Pakistan [HFP], as a “Community Advisor”. In my previous role, I served for eight years as President of PHPWS and represented Pakistan on many national, regional, and international platforms. As a patient activist; I have been advocating to achieve treatment for all those living with bleeding disorders. I strongly believe in the greater involvement of Hemophiliacs at all decision-making levels. After doing my Master’s degree in Business Administration [MBA]; I got an opportunity to work for United Nations. I believe education and determination to face the reality can lead hemophiliacs to a healthier and more successful life.
Здравствуйте, уважаемые сотрудники WFH!
Узнав о том, что скоро будет Всемирный день гемофилии, решила написать вам благодарственное письмо. Вот уже более 50 лет вы сосредоточены на помощи и спасении больных. И сегодня, благодаря вашей деятельности, диагноз “гемофилия” перестал быть смертным приговором. Спасибо вам огромное за то, что посвятили этому свою жизнь!
Скоро христиане будут праздновать Пасху. Всем известно, что Иисус Христос воскрес из мёртвых. Однако, не все знают почему Он умер. На этот вопрос исчерпывающе отвечает Священное Писание: “Бог любит мир так сильно, что отдал своего единородного Сына, чтобы каждый, кто в него верит, не погиб, а обрёл вечную жизнь” (Евангелие Иоанна 3 глава, 16 стих). Из любви к людям Бог отдал своего дорогого Сына в жертву, а Иисус, в свою очередь, согласился принять мученическую смерть ради того, чтобы избавить человечество от греха и смерти, который мы унаследовали от первой человеческой пары. Грех можно сравнить с генетическим заболеванием, которое передаётся от родителей к детям. Христос, своей жертвенной смертью, открыл перед человечеством возможность жить без этого угнетающего “заболевания”. Вскоре послушные Богу люди смогут жить вечно, без боли, страданий и даже смерти.
Спасибо ещё раз за ваш ценный труд!
Желаю успехов в труде, и крепкого здоровья вам и вашим близким.
С уважением, Наталья.
Hello all,
As the editor of the WFH News page, I’m always covering the latest news in hemophilia, and sharing the latest developments for people with bleeding disorders. It’s a rewarding job, but the most interesting day of the year for me is World Hemophilia Day, because that’s when I get to read heartfelt stories shared by people from around the world. It’s really inspirational to read about your courage, and your strength! Keep it up. I look forward to hearing more from you, as I know the the other people in our community do.
Mitch
Editor, WFH News
I am a severe hemophiliac with factor-VIII deficiency. I am from a remote island district of Bangladesh. I passed my early life without any treatment but to use ice available in fishing village near our village home. Yes I had a very critical life during my school life still I was able to complete my school education with good grades and able to get admission into Dhaka University, which actually changed my life’s goals. Then I got to be able to get in touch with WFH and Mr. Ashok Verma, the founder of HFI. He guided me to establish Hemophilia Society of Bangladesh.
And I have been working with HSB for last 28 years. It’s my pleasure to be a part of great transformation of HSB to new dimensions and the changing approach of government towards hemophiliacs is a great achievement of my life. We are now getting some factor support from government.
I am an avid solo traveler and enjoy my vacation days around the country, sometimes outside country. My physical disability cannot stop me to go around and enjoy my life. Yes I am fond of adventure traveling, whatever my body permits. I love my life, I love hemophilia, it infact strengthen my life.
Celebrating World Haemophilia Day 2022
If you have not seen or heard of heroine’s, here is one that inspires my work. Ba Egrain Ngandu from Kasamba village, Chief Hanjalika, Mazabuka District, Southern Province.
The woman you see in the two picture with her husband gave birth to 18 children of which 9 died because of haemophilia.
Trust their last son living with the condition is a clear testimony of how donated products by the World Federation of Hemophilia WHF have transformed the lives of the people living with haemophilia in Zambia.
I am greatly inspired.
Happy World Haemophilia Day to the bleeding disorders community around the Globe.
I have Severe Hemophilia A and have suffered from many complications from it. The continued support of organizations that help people suffering from this debilitating disease and all the help from supporting friends, family and colleagues has allowed me to live a relatively great life. Hoping the best for everyone who is suffering from Hemophilia. Goodluck!
I am a patient with HEMOPHILIA, I was diagnosed at the age of 10 months. Later I was found Sero Positive in 1996. I was the first patient of The Haemophilia Society Calcutta Chapter who started Anti Retroviral Therapy. This year my DIALYSIS HAS STARTED SINCE JANUARY 2022 as my kidney stopped to work. Again I am the first patient of the Haemophilia Society Calcutta Chapter who is on PERITONEAL DIALYSIS which is too expensive for me.
The H.T.C. of Calcutta Chapter has helped me a lot in my crisis period. I am thankful to the Haemophilia society Calcutta Chapter, Hemophilia Federation India, World Federation of Hemophilia.
I’m Syed Shabistan, a severe Hemophilia A from Peshawar, Pakistan.
I’m the part of spreading the WFH awareness campaign about bleeding disorders all over the globe & especially want to aware & facilitate my own community members of Hemophilia Patients Welfare Society Peshawar, Pakistan
اسمي رنا الصيفي وانا مسؤولة الشرق الاوسط في الاتحاد العالمي للهيموفيليا منذ عام ٢٠١٥.
الاحتفالات الرائعة باليوم العالمي للهيموفيليا في جميع أنحاء العالم وخاصة في منطقتنا العربية مدعاة للفخر والسرور معا. لدينا منظمات وأعضاء مجتمع افراد نزف ملتزمون بشدة، ومبدعون ونابضون بالحيوية في معظم دول الشرق الأوسط (آمل أن يجد أولئك الذين يكافحون مصدر إلهام للحاق بأقرانهم في اسرع وقت ممكن). إنكم تثبتون لنا يومًا بعد يوم ، مدي شجاعتكم وباسكم والتزامكم في الدفاع عن حق الجميع للحصول علي العلاج بشكل أفضل. أرق التحية وخالص الشكر النابع من صميم القلب لكافة مجهوداتكم اليوم وكل يوم. كل عام وانتم جميعا بخير. استمروا في التألق الأصدقاء والزملاء الأعزاء
My name is Tai-il Kim.
I have severe hemophilia A. And I have two sons and a youngest daughter. The daughter is 4 years old and of course a hemA carrier. I usually ask my children to help me when I self-inject to inform them about hemophilia in a friendly way.
Yesterday, I had a prophylaxis with my daughter. For the first time, she succeeded in stabbing the needle, even though I held her hand.
By the time our children grow up and give birth to their children, they’ll have completely overcome their hemophilia, and they won’t get these injections anymore, right?
Today, April 17th, World Hemophilia Day, I wish better treatment for hemophilia and better awareness of more bleeding disorders.
https://youtu.be/HLnTYmFc-aM
I have Von Willebrand’s disease. The diagnosis was made only 4 years ago. Now I am receiving preventive treatment. It’s scary to remember what happened before this treatment. This disease has severely undermined my health
My name is Atharv Pareek, I have Severe hemophilia A type disease, due to this disease I am not able to go to school properly nor play with friends, I have to go to the hospital 3 days a week to take the factor VIII. By taking the reason of the factor, my joints are still fine, I have thanks to the Government of Rajasthan and the World Haemophilia Federation, due to which I get these medicines free of cost. If such a medicine is made, which is to be given only once a week, then how much relief will it be for me?
Thanks 🙏🙏🙏
Yes, my story is no difference between it and most of the stories of hemophilia patients at the beginning of my life and at the age of eight months, my mother discovered that I had hemophilia through blue spots on my body as well as bruises. Examination, diagnosis, and providing treatment for me was like a horror movie for my parents, as they knew the disease from before I was born and my son was dedicated to my safety. In my childhood there was a kind of follow-up and control in terms of what games and sports were allowed and not allowed. I was wondering at the beginning of my life why my mother not Do you promise to run and play with the rest of the kids? When I joined a school, it was normal for me, but for my family, it was stressful and tiring (knowing that I have siblings who are sick with the same disease). The aim of this is to make my identity known to all my colleagues, as well as the staff and school workers. I was very happy because everyone knew me and very sad because I could not play with my colleagues. The teacher did not leave me for fear and for my safety. I was very upset. I entered the department first and came out last. And the teacher held my hand until she handed me over to my mother or older sister in order to take me home in the evening at the end of work. I would secretly go outside to meet with my friends to play football, but they would not leave me or invite me because my mother and father had betrayed them from my playing football The foot is the reason that it causes me harm, so I begged them to play just a little bit, so they let me play and pass the ball to me and let me dribble and run without anyone in the way, then we think about football to play hide and seek and several traditional games and in the evening when I come home, my mother tells me no One day you will bleed and you will scold me and keep me at home so that I can go back to my lessons, and then the joint pain starts, especially the knees and ankles. I go to my mother and tell her that I am not okay, so she reprimands me and takes me to the hospital every time … a medical examination, a diagnosis, I take a dose of Factor 8 and go home And my parents are loaded with medicines and I have a needle implanted in my elbows… Relax and then resume playing electronic games and dominoes and read books and review the lessons that I missed under the supervision of my little teacher (my older sister) and my father. Especially at night and I was encouraging myself that nothing would happen to me and I would not repeat mistakes and I would study hard in order to excel and be the happiest of those who worked for me…. Mom and Dad always tell me that you are the reason for what happens to you and that you are a child you put yourself in trouble and Problems because you are not convinced that you are not like other children, my father talks and says that if you do this again, you will not go for a picnic, and I will not buy you what you want, and I will punish without hitting you, I will deprive you of all the things you want, so ask their forgiveness and I will not repeat this and I will I obey them and take care of myself knowing my mother is a nurse and she was always keen on my safety at home At school and outside, she alerts my friends and advises them about my safety. At home, my brothers gather and tell them to be careful of his safety in my absence, me and your father. Do not let him leave the house. Do not create problems with him. If he insists on leaving, call me or your father… .. Such are the sacrifices that parents make for the sake of their children …. I was a son who caused trouble and my daughter used to advise me and teach me the meaning of hemophilia patients and its types and what are its symptoms and dangers, and she encouraged me to practice swimming until I became proficient in it … She taught me how to inject Myself used to give me health education lessons, and my father used to take me daily to school in the morning and come back in the evening to take their advice. I realized it at the age of fifteen when I entered high school. Today, I am a young man, enjoying good health, and following my preventive treatment, thank God, knowing that my knee joints are very affected. Because of inflammation, but thank God I can move and help others, knowing that I am an association founder in my state and a contributor to providing a helping hand to hemophilia patients. Thank you
From Bleeding Knees to Changing Lives: My Journey as a Hemophiliac Humanitarian.
I still remember the first time I realized I wasn’t like other kids. At six years old, while my friends played cricket and other sports in the dusty streets of Chattogram, I had to sit on the sidelines. A simple fall would leave my joints swollen for weeks, turning my childhood into a cycle of pain and hospital visits. The other children’s nickname for me—*”Glass Boy”*—wasn’t entirely wrong. Like glass, I was fragile.
“You have hemophilia,” the doctors told my parents. But in Bangladesh in the 1990s, that diagnosis came with little hope. Factor VIII injections? They might as well have been made of gold for how inaccessible they were to families like ours.
My parents’ modest income disappeared into doctor visits and ineffective treatments. Factor VIII might as well have been moon dust. I remember one midnight in 2001, my father carrying me through monsoon rains to a clinic, my right elbow joint ballooned with blood. The resident doctor shrugged: *”Give him paracetamol.”* That night birthed two realizations: the healthcare system was failing us, and I would have to become my own advocate.
The worst nights were when the bleeding wouldn’t stop. I’d lie awake, clutching my swollen knee, trying not to cry because I knew it would worry my mother. She would sit by my bed, massaging my leg with warm oil, whispering prayers. “Allah is testing your strength,” she’d say.
One December night in 2019, I thought that test might break me. My knee swelled to the size of a football; the pain was so intense I couldn’t think straight. For eight days in the hospital, with no Factor VIII available, I drifted in and out of consciousness. The doctors warned my wife I might lose mobility in that leg.
But something in me refused to accept that. Maybe it was my mother’s voice in my head. Maybe it was the thought of all the other hemophiliacs in Bangladesh who faced this struggle every day. When I finally stood again after two months of recovery, I made a promise to myself: I would turn this pain into purpose.
I can’t forget that; the classroom became my battleground. While my body often failed me, my mind became my weapon. Between bleeds, bed rest, and hospital stays, I tried to bury myself in books. Many hemophilia patients in Bangladesh drop out of school – how could they attend when walking to class was a risk? But I was determined.
I’ll never forget hobbling into my study sessions for BBA, MBA, and MPH classes, taking exams on crutches, my knee wrapped tightly. The looks from other students – some pitying, some curious – only fueled my determination. “Let them see what a hemophiliac can do,” I thought. I submitted my thesis on time from my bed due to post-bleeding resting. My beloved wife laughed as she helped me balance my laptop on the bed. *”Most patients watch movies, listen to music, or are busy with their smartphones,”* she said. I smiled. *”I’m not most patients.”*
When COVID-19 hit and our family business collapsed, it felt like another cruel blow. But sometimes, life closes one door to open another. I found myself drawn to humanitarian work, first with USAID’s tuberculosis project, then with Prottyashi NGO’s migration project, where I was devoted to educating migrant workers female family members in rural communities in different upazilas of Chittagong districts on financial literacy and entrepreneurship development training, and after successful completion of this project, I was chosen by my organization to work for the forcefully displaced Myanmar nationalities named Rohingya refugees in the Cox’s Bazar Rohingya camp.
Standing in those refugee camps, teaching menstrual hygiene management, gender identity, gender-based violence, equality and equity, child marriage, and behavioral change to adolescents and their caregivers, I saw the same look I’d seen in hospital waiting rooms – the look of people who felt forgotten. It reminded me why I had to keep fighting.
The Work That Heals Me: When I met a hemophiliac, in any event, I looked into the eyes of young patients and their terrified parents and saw my own story. When I train, motivate, and inspire hemophiliacs and their parents, as well as medical personnel, on proper bleeding disorder care, I think of all the nights I suffered needlessly.
That’s why I dream of working with the World Federation of Hemophilia – because I know what it’s like to feel hopeless, and I’ve learned how powerful hope can be.
To Anyone Reading This Who’s Struggling:
“Hemophilia tried to take my childhood, my mobility, and my dignity. But it gave me something too – a fire to make sure no one else suffers as I did.”
“Your pain doesn’t define you. Your bleeding joints don’t limit your potential. I’m living proof that our greatest weaknesses can become our most powerful strengths.”
“Every time I walk into a hospital now – not as a patient, but as an advocate – I remember that scared little boy who thought his life would always be defined by bleeding. And I smile because that boy had no idea how strong he really was.”
Best regards,
A Silent warrior from Chattogram, Bangladesh
Md Tanvir Hossain Majumder (Severe Hemophiliac “A”)
My Name is Mohamad Abdulkader Lababidi. I was born and raised in Aleppo, Syria—a city once celebrated for its ancient citadels and bustling markets, now scarred by war. My life has been a relentless dance between two forces: “hemophilia”, a genetic disorder I inherited, and the chaos of a conflict that turned streets into battlegrounds. These twin struggles have shaped who I am, but they have not defined my limits.
“Living with Hemophilia: A Daily Battle for Survival”
Hemophilia in Syria is not just a medical condition; it is a life sentence. Simple acts—like brushing my teeth or climbing stairs—carry risks. A minor cut could lead to hours of bleeding, and dental treatments? Impossible. The lack of Factor VIII injections and doctors’ unfamiliarity with the disorder forced me to become my own advocate. At 15, I developed kidney stones. The pain was excruciating, but the “solution” was worse: outdated plasma transfusions instead of proper clotting agents. For weeks, I endured sleepless nights, clutching my side, while doctors shrugged helplessly.
Even diagnosis was a labyrinth. Blood tests contradicted each other—one day my Factor VIII level was 2%, the next 5%. “Which result is true?” I asked. No one knew. This uncertainty became my shadow, a constant reminder that my body was a puzzle no one could solve.
A Society That Sees Weakness, Not Humanity
In Syria, illness is a stigma. At school, teachers mocked my absences, unaware that a single nosebleed could hospitalize me. Classmates called me “glass boy,” whispering that I’d shatter if touched. The worst blow came during a history exam. I collapsed from joint pain, my knee swollen like a balloon. Instead of help, the principal accused me of faking to avoid the test. “Go home,” he said. “You’re a burden to this class.”
Outside school, the judgment deepened. When I confessed my condition to a girl I admired, her family forbade her from seeing me. “We don’t want sick blood in our lineage,” they said. Hemophilia, invisible to the eye, became a mark of shame—a secret I carried like a second skin.
War: When Survival Overshadows Everything
The war didn’t just destroy buildings; it shattered any semblance of normalcy. In 2016, a mortar shell hit our neighbor’s house. The blast shattered our windows, and shrapnel pierced my bedroom wall—inches from where I slept. For months, I studied by candlelight, textbooks propped against rubble. Universities, once my escape, became death traps. Professors fled; libraries burned.
Yet, in the darkness, I found light. With no access to lectures, I turned to philosophy. Nietzsche’s words—“What does not kill me makes me stronger”—echoed in my mind as I read by flashlight. Hobbes’ theories on justice fueled my resolve to study law. These books weren’t just pages; they were lifelines, teaching me to channel rage into purpose.
Hemophilia: The Unlikely Teacher
Pain is a harsh instructor, but it taught me lessons no school could. Chronic joint damage forced me to sit still for hours—a curse that became a gift. I devoured works on human rights, scribbling notes in margins. Marcus Aurelius’ meditations on endurance mirrored my reality: “You have power over your mind—not outside events.”
My eye condition, nystagmus, made reading a struggle. Words danced on the page, but I refused to quit. I memorized paragraphs, turning weaknesses into discipline. Slowly, I realized: hemophilia didn’t make me fragile; it made me relentless.
A Plea to the World: See Us, Hear Us
To the outside world, Syria is a headline—a blur of bombs and refugees. But behind the statistics are people like me, fighting silent wars. We don’t need pity; we need “action”. Factor VIII isn’t a luxury; it’s a lifeline. Education isn’t a privilege; it’s a right.
My dream? To stand in a courtroom, defending those whose voices are drowned by war and prejudice. To prove that a “broken” body can house an unbreakable spirit. My story isn’t unique—it’s a mirror reflecting thousands of untold struggles. See them. Hear them.
To read my full story in my own words here …..
https://drive.google.com/file/d/1ju0uwGxoApgy2cxVeGj8npXyMy2Tn4Yt/view?usp=drivesdk
And please Follow my journey on X (Twitter) here:
https://x.com/Mohamad15355791?t=ABhKC_G_01Q3c3i-wEvatw&s=09
Join me as I share raw, unfiltered truths about living with hemophilia in a war-torn land. Every word is a cry for justice.
My name is Muhiba Amir. I’m 18 years old. I’m a patient of VWD type lll .I am student of FSc Pre medical in Punjab group of colleges. I diagnosed with VWD when I was 6 month old and I had my severe nose bleeding. Also my father and sister have this disease so they already know about this disease
I had face severe nose bleeds and blood vomits after every 4 to 5 month till I was 13 years. I was always recovered when I got 13 to 14 bags of FFP and blood. My parents and family play an important supportive role in my life . Due to the support of my parents and family, I managed my studies along with VWD. My teachers was also very cooperative. Although it was too much hard to manage VWD along with studies but Allah helps me.
Now Alhamdulillah I enjoy a better lifestyle with VWD because I get too much awareness from hemophilla patients welfare society – Lahore.
Further I’ve big ambitions with VWD and InshaAllah I’ll complete my all ambitions with VWD .
Hi,
I am a young woman and I was diagnosed when I got my period with mild vWD type I and a thrombocytopathy. My doctor at that time was amazing. My first treatment didn’t work out fine, so I got other options. I felt secure and received an amazing treatment, inclusive a 24h number to call, when there was an emergency.
At my first appointment the doctor claimed all the diagnostic that was made was wrong and had to be retaken. I already had taken many tests at my old doctor before but I still agreed. After the tests they didn’t say my diagnosis was wrong but they didn’t say it was right either. They just sent me the outcome of my blood Tests without any Personal Explanation. When I asked for explanation, they didn’t answer at All. They just said, with my old and still current diagnosis I received the wrong treatment. They just Varied my first treatmentand claimed Ii should work by itself. I Tried to explain my Problems with my first treatment and Trier to Argue why I Would like to Keep my Modified treatment, that helped me a lot better but they denied It. And their only explanation was, that they don’t like to give that Kind of treatment. (I Researched IT later and Found out, that my treatment wasn’t unusual at all)
A few Months later at night, i thought I had a muscle bleed. I wasn’t Sure but the only emergency contact they gave to me, was the emergency room. They told me, when I go to the ER, everybody will know waht to do. I went there and nobody knew what to do. Nobody there had ever heard about the treatment of vWD or thrombocytopathy and they hat no idea how to treat me correctly. I called my old Doctor from my hometown and that was the only only who was able to help me after All.
That was a very long Story. My whole Intention telling it, was to Show that even in a medical well developed country where it seems that everybody hast access to treatment, still happens scenarios like I experienced.
The Girl Who Bled Hope
Life is no bed of roses; it is a profound journey marked by shadows and light, by trials and triumphs. Each path—whether smooth or stormy—shapes us in ways words often fail to express. Ultimately, it’s our own strength, choices, and resilience that determine how we walk this road. And so, here unfolds the story of my journey—each step etched with emotion, growth, and meaning, leading me to this very moment.
I am Midhat Khalid, currently pursuing my MS in Clinical Psychology, a field that mirrors the empathy and resilience I’ve grown up with. I recently graduated from Government College University, Lahore (GCU), but my journey began far before any degree—at just two years, when I was diagnosed with Von Willebrand Disease Type II (VWD Type II).
It all started with a fall from a window. I received stitches on my face, but the bleeding wouldn’t stop. That moment was more than just a physical injury—it marked the beginning of a life lived with extraordinary challenges. After a series of tests, my diagnosis was confirmed. My parents, unaware of such a condition and with no family history of it, were overwhelmed. We were introduced to the Hemophilia Patients Welfare Society (HPWS), Lahore, where I met Dr. Shahla, a guiding light who not only registered me as a patient but became a mentor through the most fragile years of my life.
Growing up as the youngest and third-born child in a nuclear family, I was treated with constant caution. My siblings lived freely, while I had to walk on metaphorical eggshells—every step measured, every activity weighed for risk. Being a girl with a bleeding disorder in a society that already puts limitations on girls was a double burden. While others were concerned with dolls and dresses, I was learning about infusions, bleeding triggers, and hemoglobin levels. I became my own caretaker before I even learned how to care for others.
From early on, I was a shy child. I avoided large gatherings, never indulged in late-night outings—despite being a girl, I never experienced the carefree joys associated with girlhood. But in the silence of solitude, I found purpose—in books, in learning, in my love for understanding the human mind. That’s what led me to psychology. Dr. Shahla once told my parents, “Never compromise on her studies. She has the thirst for knowledge.” And they never did.
I completed my O-levels and joined Lahore College for FSC (Pre-Medical). I kept my condition hidden, even from friends. Only one teacher knew. I didn’t want sympathy; I just wanted to live as normally as I could. But normalcy was elusive. My health would often intervene in painful, dramatic ways.
During college, I developed a habit of drinking cold coffee, unaware it would impact my health. The result was severe menorrhagia—my hemoglobin dropped to 5. Just before my pre-board exams, I was hospitalized. On January 1st, 2020, I was given a blood transfusion, and the next day, an iron infusion. That infusion nearly cost me my life—my blood pressure soared to 250, and I vividly remember jumping on the hospital bed, losing consciousness. For the first time, I saw death up close. That experience changed me. Since then, oral medications and monitoring my health have become part of my daily routine.
But July 2016 was a turning point—not in health, but in purpose. I began participating in HPWS workshops and meetings. I remembered what Dr. Shahla always said: “Never hide this disorder. Own it—it’s your special ability.” That was the moment I stopped seeing VWD as a weakness and began embracing it as a part of my identity.
I started working actively for my “bleeding brothers and sisters,” raising awareness, educating, and sharing my journey. Today, I’m proud to serve as an Executive Board Member of HPWS, an Executive Member of Hemophilia Foundation Pakistan (HFP), the Youth Leader of the Lahore Chapter, a National Youth Group member, and a representative for women’s groups both nationally and at the chapter level. Each of these roles fuels my mission to make life better for others like me.
Being a girl with a rare bleeding disorder in a patriarchal society like Pakistan comes with challenges few can understand. From avoiding sports to hiding sanitary products and enduring judgment for skipping classes or gatherings—every aspect of life becomes a delicate negotiation between pain and expectation. Society often views girls as fragile, but add a bleeding disorder, and you’re treated like you’re broken. I have had to fight for my dreams twice as hard—once against the limitations of my body, and once against the limitations placed by society.
But I am here. Still standing. Still dreaming. And still fighting—not just for myself, but for every child, every girl, every patient who thinks their condition makes them less than.
As a future psychologist, my goal is to serve not just minds but hearts—especially those who bleed in silence. My dream is to show the world that a person with a bleeding disorder can do anything. All we need is awareness, compassion, and a few precautions.
To those who live with rare disorders: you are not cursed, you are chosen. God gives the most sensitive hearts the heaviest burdens—not to break them, but to shape them into healers. We are here to serve, to feel deeply, and to light the way for others in the dark.
Never lose hope. There is always light at the end of the tunnel—even if you have to bleed your way through it.
Bleeding Disorders in Pakistan: A Struggle for Treatment and Hope
Pakistan’s healthcare system has long overlooked patients with bleeding disorders (PwBDs), leaving them without access to essential treatment. For years, individuals suffering from conditions like hemophilia, von Willebrand disease, rare factors deficiencies etc faced life-threatening complications due to the unavailability of Clotting Factors Concentrates (CFCs) in public sector infirmaries. However, the introduction of the Humanitarian Aid Program (HAP) by the World Federation of Hemophilia (WFH) after 2015 has transformed the landscape for PwBDs in Pakistan.
The WFH-HAP has been a game changer, allowing thousands of PwBDs to live healthier and with more promising lives. Before this initiative, many patients were left helpless, with limited access to even basic medical care. The availability of CFCs through WFH’s humanitarian efforts has enabled patients to experience a quality life which they never had before, reducing disabilities and preventing casualties.
Hemophilia Patients Welfare Society (HPWS) – Peshawar Chapter: A Beacon of Hope
Among the five active HPWS chapters across Pakistan, the Peshawar Chapter plays a crucial role in supporting PwBDs in Khyber Pakhtunkhwa (KP), which is more than 20% of the total registered PWBDs in Pakistan. The Province KP is located in the northwestern region of Pakistan, is known for its diverse cultural, geopolitical and uneven terrain. These geographical factors present unique challenges in healthcare accessibility, especially for women and girls with bleeding disorders (WGBDs).
The HPWS – Peshawar Chapter has been at the forefront of advocating for PwBDs, ensuring access to treatment, raising awareness, providing essential medical aid and most importantly, advocating its Women and Girls groups to speak for the cause. This group is leading by two prominent female with vWD while both having doctoral degrees. Despite the significant progress, the WGBDs are struggling hard to minimise such barriers to improve lives more prosperous and happier. It’s now imperative to provide opportunities for such young and educated WGBDs to participate in multidisciplinary training/educational events to enable them to acquire valuable knowledge and expertise regarding bleeding disorders, which they can subsequently share and implement at the local level, thereby fostering a positive impact within their communities.
As entire World will observe World Hemophilia Day on April 17, 2025, which is the dedicated year to WGBDs, it is essential to acknowledge the ongoing struggles faced by PwBDs while also to celebrate the progress made through initiatives like WFH’s Humanitarian Aid Program. It is time for the government to recognize its responsibility and take concrete steps to provide sustainable treatment solutions for PwBDs across the country.
“Access to treatment is not a privilege; it is a right. On this World Hemophilia Day, let’s commit to vanish gender-biased differences and to ensure healthcare for all, especially for WGBDs who have long been neglected.”
— Umar Khattak
Una frase que para mí es muy común es “desafiar lo imposible!” Hola saludos hemofílicos. Yo soy de Brasil. Todavía estoy aquí. Cuando tenía 2 años, el médico le dijo a mi padre que sólo viviría otros 6 meses. Antes de eso me había caído y me había cortado, y como ni siquiera los médicos de mi ciudad sabían de la hemofilia, sangré durante semanas. Un nuevo médico llegó a la ciudad, sospechó hemofilia, me hizo una transfusión de sangre de mi padre y me envió a la capital. Cuando mi padre le dijo a nuestro médico de familia que tenía henofilia, dijo que no viviría más de 6 meses. En aquella época era difícil, 1980 y este médico no sabía mucho sobre la hemofilia. Pasó el tiempo. Cuando las personas con hemofilia empezaron a infectarse con el SIDA, pasé años sin tratar las hemorragias por miedo. Adquirí secuelas en los tobillos, rodillas y codos. Cuando me gradué comencé a abogar por un mejor tratamiento. La presidenta de la Federación Brasileña de Hemofilia en ese momento era la Dra. Silvia Thomas. Luego Tania Pietrobelli. La lucha unida de muchos ha mejorado el tratamiento en Brasil. Hoy es un referente en el mundo. También es responsable de esto el Dr. Guilherme Genovez, quien fue Coordinador General de Sangre y Hemoderivados de 2010 a 2014. En 2004, creé una comunidad de hemofilia en Orkut y el blog Hemofilia News. Tuve muchas noches de insomnio, dolores, dificultades. Había acoso en la escuela. Pero me gradué y trabajo en el campo de la educación y también en la investigación. Trabajo como defensor de la causa de las personas con hemofilia y soy miembro de ABRAPHEM (Asociación Brasileña de Personas con Hemofilia). El blog sigue existiendo y también soy creador de contenidos. Ayudamos a mucha gente pero esto me ayudó mucho más. Somos más fuertes que la señora Hemofilia
I am a vwd type 3 patient and i am studying in university. I diagnosed vwd at the age of 7 and i think this disease is a strength for me to move in my life
My name is Atharv Pareek 9 years old, I have Severe hemophilia A type disease, due to this disease I am not able to go to school properly nor play with friends, I have to go to the hospital 4 days a week to take the factor VIII Prohylaxis treatment. By taking the reason of the factor, my joints are still fine, I have thanks to the Government of Rajasthan and the World Haemophilia Federation, due to which I get these medicines free of cost. If such a medicine is made, which is to be given only once a week, then how much relief will it be for me?
Thanks 🙏🙏🙏
Discover Marlene’s story as part of the World Hemophilia Day 2025 video series:
Hi, I am Marlene Beijevelt and I’m working in the hemophilia treatment centre in Amsterdam, The Netherlands. I think that women and girls with bleeding disorders deserve better care and more understanding and at least faster diagnosis.
In our treatment centre we’re testing girls as of six months who tend to have a bleeding disorder. We also work very intensively together with gynecology and have an outpatient clinic for women and girls with heavy menstrual bleeds. It is time to break the taboo and to ensure that symptoms are taken seriously.
Let’s work together to fight for equal access and care so women no longer have to suffer in silence. Their health should not depend on ignorance and stigma. Every woman and girl deserves the right care at the right time.
Discover Tatiana’s story as part of the World Hemophilia Day 2025 video series:
17 years ago, I gave birth to a baby girl suffering from severe factor 7 deficiency. From the moment our daughter was diagnosed, our lives changed dramatically. With little to no information about this very rare bleeding disorder, we started navigating a world that was unknown not only to us, but to the majority of healthcare professionals.
My daughter has suffered from joint, muscle as well as intracranial bleeds, not to mention having to deal with her menstrual cycle as well as chronic anemia. Frequent hospital visits, constant medical treatment and an ongoing state of alertness have become our daily routine. Although the last 17 years have been profoundly challenging, hemophilia has in fact brought our family closer. We have learned to communicate openly about our fears and celebrate the victories with great joy.
So for those of you in similar situations, please don’t forget that there’s always light at the end of a dark tunnel. Connecting with a larger bleeding disorders community has been a lifesaver for us. The constant support and their insights remain and have been invaluable. By advocating and raising awareness for equal treatment, I believe we can all make a difference. Let’s give these girls the care they need.
Discover Anupama’s story as part of the World Hemophilia Day 2025 video series:
Hello, this is Anupama, a member of the girls and women with inherited bleeding disorders committee of WFH. I’m from India and I have a mild deficiency of factor VIII. But I got my diagnosis only in my 30s. It’s very, very important to create awareness about the possibility of bleeding disorders in women because many don’t know about it. And it’s equally important to advocate for diagnosis, and access to treatment for women and girls as well.
In India, our NMO, HFI, has been advocating for the same and our women’s group has been conducting workshops and this years four regional workshops focused on women and girls with bleeding disorders as well.
So let’s create awareness about women and girls with bleeding disorders and advocate for proper diagnosis and access to treatment, globally.
Women and girls bleed to.
Pour toute question, veuillez contacter marcomm@wfh.org.
Français 
