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 would like to share my story anonoumisly, since I fear negative consequences by telling it.

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.

• When I finished school,  I moved far away to another City to go to a University, so I was Forced to switch my doctor. It may be Importen to add, that my first hemophilia Doctor wasn’t in a Hospital but the Doctor I moved to works at a University Hospital.

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.