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Discover stories about how bleeding disorders have affected people and their loved ones.
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I am Khandaker Amirul Islam, Haemophilia – A patient working as a volunteer & patient counselor of HTC Lab One Foundation. My WBDR ID number is 28569, HTC Lab One Foundation, Uttara – 1230, Dhaka, Bangladesh.
@Success History@
Last four months ago, suddenly I felt severe chest pain & attended at HTC LOF. I was a regular attendee for my routine follow up at HTC Lab One Foundation under Professor Dr. Md. Salahuddin Shah.
He arranged for my admission under his supervision at BMU ( BDMMU). And finally after angiography I had been got two heart rings implanted in my heart from Cardiology Department of Bangladesh Medical University (BSMMU).It was a very difficult task for me and it was not so much easy that it could be done from any place but by the grace of Almighty Allah Prof.Dr. Md. Salahuddin Shah & Cardilogy Department helped me a lot. I have received required factors from HTC LOF, HTC BSM ( BSMMU) & NMO (HSB). Fortunately my life is safed. I am grateful to WFH Humanitarian Aids HTCs & HSB.
Now I have to take Factor Vlll after every 15 days.
Most of the haemophilia patients in our Country are very poor. So we need increased number of factors for our survival.
We have observed World Hemophilia Day 2025 through rally, Scientific seminar & patients counselling at HTC LOF.
I sincerely appeal to the WFH Humanitarian Aid & WBDR team to consider allocating more clotting factors to HTC, Lab One Foundation & this HTC remained open for 24 hours.
I believe this will enable the organization to save the lives of many more hemophilia patients and continue to provide compassionate support to them.
On this special day, I wish all hemophilia patients around the world good health and a bright future.
My son Owen has severe Hemophilia, today my office show support and love. Team Owen!!!
I am Hafizur Rahman, WBDR Data Management and Patients Councilor, HTC, Lab One Foundation, Dhaka, Bangladesh.
From my professional experience, I have closely observed the sincere and selfless efforts of the Honorable Sir Prof. Dr. Md. Salahuddin Shah, Chairman of Lab One Foundation, who has always stood beside hemophilia patients. He has been relentlessly working to ensure their healthy lives by providing free treatment, essential medicines, fresh frozen plasma, and clotting factors.
Through regular communication with patients and listening to their stories of daily struggles, I have come to realize the immense battle they fight every day just to survive and stay healthy. Especially when unexpected bleeding occurs in any part of their body, Lab One Foundation, always remains prepared to provide the necessary medicines, factors, and fresh frozen plasma as swiftly as possible.
I would like to express my heartfelt gratitude and deep respect to the Honorable Sir Prof. Dr. Md. Salahuddin Shah, Chairman and the entire team of HTC, Lab One Foundation, for their compassionate and humanitarian efforts.
On the occasion of World Hemophilia Day 2025, I sincerely appeal to WBDR to kindly consider the allocation of clotting factors to HTC, Lab One Foundation, . I believe this will enable the organization to save the lives of many more hemophilia patients and continue to extend its compassionate support to them.
On this special day, I wish good health and a bright future to all hemophilia patients around the world.
“A Silent Bleed, A Silent Loss”
As a Clinical Haematologist dedicated to serving patients with bleeding disorders, I often meet individuals whose lives have been shaped by unrecognized or untreated conditions. Recently, I encountered a deeply moving case that reminded me how crucial awareness and early diagnosis truly are.
A young woman was admitted to the gynaecology ward during her first postnatal period with uncontrolled bleeding from a surgical wound following an emergency hysterectomy. Her story unfolded tragically: after a Caesarean section, excessive bleeding began and could not be controlled even after uterine closure. The obstetric team, in a desperate attempt to save her life, had no choice but to perform a hysterectomy.
When I was consulted, I delved deeper into her medical history. She revealed she had experienced heavy menstrual bleeding (menorrhagia) since menarche. Yet, due to social stigma and lack of awareness, neither she nor her family ever sought medical advice. Her symptoms were normalized, explained away by vague cultural beliefs and silence.
Unfortunately, that silence cost her dearly—her ability to become a mother was taken away in a moment that should have brought her joy. What could have been managed with timely diagnosis and care turned into irreversible loss.
This story is a painful but powerful reminder: bleeding disorders in women are underrecognized, under diagnosed, and often hidden behind shame or misinformation. We must speak up, educate, and ensure that no one loses their future to a treatable condition.
On this World Hemophilia Day, let us reaffirm our commitment to break the silence, raise awareness, and advocate for early diagnosis and care for all—especially the women and girls who bleed unseen.
“Strengths with Deficiency”
I’m not writing about my so called Royal Disease clotting factor😁, it’s about those moments which are almost deficit from my life, maybe it’s the feeling of majority persons with bleeding disorders.
Your childhood will be ruined by your pressurized limited life, your special events like Eid, Christmas and Diwali or even marriages.
I missed my school life I wish to be punished by my teacher but because of my family doctor they don’t allow my teachers to punish me, i never like to be special (sympathy)boy.
But when the creator take something from you he gives you extra strengths like, Endurance you will not take painkillers for your pain because you knew that, it will not work on your severe pain.
You will always be Aware of coming struggles and your survival strategies.
Sometime there will be nothing left for the cure, but you will Fight like warrior.
Whenever you felt tired in your life you will find your Parents beside you. It’s the beautiful climax of everyone life story, but in our (community🩸) life they have a role of doctors, consultant, physical therapist and nutritionist, sometime friend!
“Life will always hit Hard if you hemophiliac or”
Today is World Hemophilia Day
It has been 3 years since my son was diagnosed with severe hemophilia A. The past years were very challenging for us. Knowing that our country have limited knowledge to rare bleeding disorders, it is also hard for us to look for medical practitioners who knows how to infuse for hemophilia patient.
Recently, our son got into a mild accident wherein he accidentally stumbled and hurt his right foot. He is currently in the province that lacks medical care for patient like him. In order for us to get him treated, we connected to HAPLOS Hemophilia Philippines – an organization for patients with bleeding disorder. I called one of the officers and asked help for the members on nearby areas. Several calls and coordination were made, and luckily we were able to find one. The infusion started and right now he is on recovery mode.
Given that our son is a 3 year old boy and a toddler, it is really hard for us to stop him from moving, as he seeks adventures and obstacles. His pain tolerance is so high that he can endure the pain. But despite that, I am so proud of him being so strong and healthy.
As a mother and a carrier of Hemophilia, I also feel symptoms like easily bruising, heavy menstrual and prolonged bleeding and joint pains across my knees. There are days where the pain won’t let me sleep. But overall, I was able to get through with it.
I am so thankful that even in dark days, the HAPLOS Hemophilia Philippines will always be there as a support system (emotionally and mentally) to mothers like me and patients like my son. Ever since we joined the organization, there was not a time that they did not answer all the inquires I had. They helped me and educated me more about this and engaged with different members.
And to my family especially to my husband, I am so thankful that despite our situation, they are always there to help us during the hard times, added by the people around us who supported us in this journey.
Lastly, as we celebrated the World Hemophilia Day, I want everyone to know that this rare bleeding disorder is just around the corner. To share with them what this is and for them to stop judging the Hemophilia Patients that they are limited on the things they can do, and cannot do normal things like other people does.
A Journey with Hemophilia B.
I would like to Introduce myself as Desh Deepak Sharma From Rupaspur Distt. Firozabad Uttar Pradesh (India) & Share my journey of life with Haemophilia. My D.O.B is 21 September 1996.Currently,I am registered at Agra Chapter (Hemophilia Society Agra) . I belong to a Middle class Family. My father is a Teacher and Mother is a House-Wife. I have two elder Sisters.
I was very shocked at that time when I knew that I am having Hemophilia and it is even the worst category ie. a severe Hemophiliac B Factor <=1%.At that Time I was 10 years Old. But I never quit. I started Doing Exercise & Yoga and it really Helped me a lot.I want to share that Even I have Hemophilia , I Won 5 gold medals including 3 state Level and 2 national Level Yoga Championship.
My Family always Motivate me a lot and Specially My Father Shri. Madan Gopal Sharma Who is Also 6 time Gold Medalist inspired me and He always told me that if God made You Rarest of rare then you must Have to Be an extra Ordinary . Other than yoga, I also did Cycling Daily Around 16 km to and fro to reach my School and College also. Cycling Helped me a lot .I did my Post –Graduation in Msc. Chemistry and Currently I am Pursuing Bachelor of Education with Maths and Science.
Actually I want to tell my friends that with yoga I Never find any need of Factor till My 17 years of age ,But One day Unfortunately I met with an Accident and then from that day Regularly i need factor whenever any sort of pain occur in my body. It is not common to have Knee ,elbow & Shoulder Joint Frequent bleeds but internal as well as External bleeding also.
As I have been through all the difficulties which a person who is having Hemophilia Suffers but Never give up. I want to Motivate My friends that Sometimes We face the Circumstances which are not in our Hand but we should Never Quit. One must adopt a good Habit of Yoga & Exercise as well as Cycling it will help to keep us Fit .We can Definitely Achieve our Goal with our Strong desire and Determination .
I am currently a government employee Education Department ( Lecturer Of Chemistry)
Now
My Contact Details.
Mobile no:-9058908564(Whatsapp No)
Email id:-deshdeepaksharma21996@gmail.com
Dear ones
Myself Mahadeva Nanjappa PWH with Factor-VIII. From Mysore chapter. I suffered a lots of pain from bleeding, swelling, in my childhood & througout my life. My strength is only my Mother he took very much care about me. In 1999 i got married to kind hearted girl. My luck, She became the second mother to me. she took all caring responsible from my mother. Now i have two Sons, both doing Engineering degree.
Their is no factor availability ip to age of 40. since 2010-11 we came to know about the factors at Govt hospital. Mysore Hemophilia chapter started in 2012. I joined chapter as Jt secretory & Secretary & served pwhs up to 2024. We have started HTC at Govt hospital & In 2 private Hospitals in Mysore on 2018-19. We got very much support of Humanitarian factors from HFI & WFH. Websre very much kind to HFI & WFH. Now So many PWHs are beniffitted by this factors..
Once again thanks to WFH & HFI for providing & helping our PWH community by factors.
With regards.
N Mahadeva
9945622705
My name is Rimsha Imran, and I have completed my Bachelor’s degree in Statistics. I am a patient of von Willebrand Disease (VWD) Type 3. I was diagnosed at the age of 7. My younger brother is also a patient of VWD Type 3, and he was diagnosed due to excessive bleeding after circumcision. In my case, I used to develop unexplained bruises on my body, which eventually led to my diagnosis.
Although I did not face severe bleeding issues, being diagnosed with VWD was not something negative for me. In fact, I believe it became a source of strength. This condition has shaped me into who I am today — someone capable of being independent. I truly believe that when Allah tests you with something, He blesses you in many other ways.
When I was diagnosed, I was fortunate enough to be under the care of an excellent doctor, Dr. Shahla Sohail. If I consider myself successful today, it is largely because of her guidance. She strongly encouraged me to focus on my studies and career, and as a result, I have grown into a strong, determined young woman who embraces her condition with resilience.
For additional confidence and personal development, Dr. Shahla provided me with an internship in her society. To be completely honest, I do not know much about my condition; however, while under her care, I received extensive information about both hemophilia and VWD.
I have often been asked with great curiosity, “What is your disease?” Many people are still unaware of our condition, and it saddens me deeply that such a life-threatening disorder remains largely unknown. I want my voice to be heard by everyone so that more people become aware of this disease.
When it comes to women, especially regarding marriage, there are many challenges. Not only do outsiders often say, “Who would marry you?” but even members of my own family echo the same sentiment, saying that because of my condition, who would want to marry me? There is a common misconception that life comes to a halt if one does not get married. However, that is not true. People repeatedly traumatize you by insisting that you are too ill to do anything and that you should simply stay at home and take care of domestic tasks.
As an independent woman, I want to encourage all girls by reminding them that we are not weak; we are strong. Despite this disease, we are capable of handling all outdoor tasks. This is my life story and my perspective on VWD. May Allah bless every patient with better health and a fulfilling life.
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 .
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.
JOURNEY WITH HEMOPHILIA
I am T. Jaipal, 73 years old ,Member and Treasurer of Hemophilia society Pondicherry chapter. My journey remained from South to North and North to South .
I was born on 6thOctober 1950 at Chennai. My father being central government staff got transferred to Jabalpur and we got settled there. Up to 12 years of my age days passed with full of pain and treated with Home remedies. There was a small Rt knee hit and from then onwards spontaneous bleeding occurred with a big swelling and intolerable pain. In spite of pain killer medicine taken, Rt, Knee got totally stiff and then onwards RT Knee had contracture. Then many episodes of joint and muscle bleed occurred, and I started my career along with the pain and Courage given by God .
I completed my HSSC examination and joined Central Government as LDC Staff. From then onwards I reached up to Office Superintendent Level -1, in Administration Division, in no time I became handicapped due to repeated joint and muscle bleed
Things were going normal and one fine morning spontaneous Gum bleeding occurred and it took 3 to 4 days to become normal. In the year 2004, September Intra Abdominal bleed occurred and not able to find reason and 10bottles of wholesome blood given to stop the bleeding. I again consulted with the Dr’s and again Medical checkups was done thoroughly and found that it is blood clotting disorder Hemophilia. Blood Assay was done and found F VIII < 1% which is severe. Then I got Registered in Hemophilia society Jabalpur as a member.
In the month of April 2006 I got Voluntary Retirement leaving 5 years service. I had an opportunity to settle in Pondicherry along with my son and my wife. Since 2011, we settled in Pondicherry. I called Mr. A. Balaji, secretary of Hemophilia society Pondicherry chapter,and he advised me to contact Dr. P. Nalini, and get registered in Hemophilia society Pondicherry chapter. Then Dr. P.Nalini called me over phone to come to office immediately and she examined all the medical records and told to get registered in the Pondicherry chapter. She felt very sad due to disability happened to me
From then onwards Dr. P. Nalini is fully taking care of me. She with the help JIPMER Central Government Health Scheme, received Factor VIII for me as regular prophylaxis. It would not be out of order to say that Prof. Dr. P. Nalini is GOD for Hemophiliacs of Pondicherry chapter providing personnel touch to all hemophiliacs irrespect of caste, creed and colour. This year 2023 Prof. Dr. P. Nalini is awarded with Padma Shri by the Government of India.
I am living peaceful life with the help of Hemophilia society Pondicherry chapter,
JIPMER Doctors, Central Government Health Scheme, and along with my family support also.
Thanking you,
Treasurer and Member
Hemophilia society Pondicherry chapter
Hi, Greetings for the Day.
I myself Mr. Pritish Navnath Desai sharing a story whether its success story or struggle story that you all decide. The guy name Pritish born on 14 October 1985 as a healthy and active baby. All three families Desai Family, Mhatre Family , Pathare Family were into celebration. Their celebration won’t last for long as when I was 1.5 year old I diagnoses with Haemophilia B factor 9 deficiency less than 1 ℅ . All three families are in tense but DIN of Wadia Hospital Dr. Karim Boy and their team help me to meet my success. I have seen lots of bleeds, many times I given the exam from hospital. So many things. I have seen many downs in my life specially love life due to Haemophilia , but it was ok. I have Lost opportunity to join Indian Air Force, also Lost precious job in Icici Bank due to this, but it was ok. But one Company stands with me that’s Jaguar LandRover it helps me grow it teaches me engineering skill, although I am MBA in finance and MBA in banking.
When I look back I See the guy who destroy thousand times and rebuilt. That’s me.
14/6/1994 a day after joining as Paediatrician in Government Hospital Aluva. Called to see a boy with excruciating pain and swelling of the knee joint, I was totally at a loss as to how to manage the case. The patient had a white ID card from Christian Medical College, Vellore identifying him as Hemophilia A severe patient. I rushed to my adjacent RMO Quarters to check with Nelson’s Text Book of Paediatrics as I had not seen a case of hemophilia before. The only option at that time was Cryoprecipitate which was available with the Components Separation Unit at Cochin. With 6 units twice daily he became alright. The child’s younger brother had added Duchenne Muscular Dystrophy also an X-linked disorder that proved fatal and he succumbed to respiratory paralysis below ten years of age.
Brush with this thereto unfamiliar disease made me associate with HFI (Haemophilia Federation of India) Ankamali chapter. At their request, we arranged a component separation license to ensure a free supply of cryoprecipitate the only treatment available. Occasionally the Chapter used to receive factor concentrates from the World Federation of Haemophilia as donations. However, the patient conclave organized in 2012 with the participation of local bodies and ministers proved to be an eye-opener and on World Hemophilia Day 2013 the foundation stone for the first and only Comprehensive Haemophilia Treatment Centre was laid. On February 20th, 2014 the Centre was opened by the Chief Minister who announced on-demand factor treatment for children below 18 and a monthly pension of Rs.1000/- The very next year 20th March 2015 at the valedictory function of the National HTC conclave hosted by us the Chief Minister announced the extension of ODT to all patients and prophylaxis for children in the District. In 2021 the Government of Kerala under the Asadhara programme extended Universal Paediatric Prophylaxis and adult ODT in the state. In 2020 we started nonfactor therapy also and now we have ten kids on Emicizumab. We could contribute in our own humble manner to the advocacy efforts along with HFI. My 50 years long stint with Health Services Department was also helpful. We are helped by the Hematology Department of Amrita Institute of Medical Sciences.
We have 1071 PwH enrolled here (883 HA + 188HB) Looking back on the plight of PwH. Our laboratory has EQADS with WFH and Christian Medical College, Vellore. The centre is a participant of WBDR and just completed 4 years WFHTwinning Programme with New Castle upon Tyne. We have had 24 publications in the last 9 years. WFH recognized our WBDR performance, Twinning efforts, and Laboratory services.
Sufro de von willebrand, ya que la heredé de mi papá. Soy la tercera generación con esta condición, siempre pensé que era normal tener anemia y sangrados abundantes durante mi menstruación (igual que mis tias), pero al salir del país me di cuenta que hay otras opciones para las personas con mi condición y que no tenía que vivir con anemia, así que gracias a la hematologa que me atendió en Ecuador empecé a tomar acido tranexanico y desmopresina, eso me ayudó bastante y pide tener un mejor control del sangrado. Actualmente uso Mirena y la menstruación prácticamente se detuvo. También solo uso factor cuando tengo una operación o extracción dental, y por primera vez tengo factor en casos de emergencia, por lo cual estoy muy agradecida, ya que hace un par de años tuve una operación y durante el postoperatorio tuve una hemorragia y nada de factor para poder controlarla. Solo el ácido tranexanico me ayudó en ese momento. En fin, agradezco a todos los que me han ayudado en este camino de padecer von willebrand y que me enseñaron que se puede tener buena calidad de vida a pesar de los sangrados.
Hola me llamo Nayeli Dueñas soy mamá de Ian Lozano un pequeño de 6 años con Hemofilia A Leve , a Ian le detectaron la enfermedad cuando el tenia apenas 2 añitos en mi experiencia puedo decirles que siendo una enfermedad tan rara y muy poco conocida me inundó y nos inundó a mí , a mi esposo y a mis hijos un miedo terrible y más por qué veíamos a ni ñino tan chiquito y tan indefenso …
Hoy gracias a su tratamiento , a la información que se brinda acerca de la Hemofilia, a los especialistas que llevan su caso y a mi familia por el apoyo hoy mi hijo lleva una calidad de vida mejor y esperemos que así siga …
Un beso y un abrazo desde Guadalajara Jalisco México !
Hola me llamo Casandra Ramirez y soy madre de un hijo hemofilico ,se llama Juan Antonio de 16 años, el cual tiene 2 hermanas mayores podrán imaginarse que Juan siendo un hombresito después de 2 mujeres ,me sentía realizada como madre ya mi hijo varón y fue 6 meses después de su nacimiento que descubrimos que era hemofilico , en esos momentos mi mundo se vino abajo ,solo pensaba que mi hijo moriría en cualquier momento ,no teníamos nada de conocimiento referente a la enfermedad ,ni medicamento ,…fue tan doloroso ver Ami hijo llorando por las noches con tanto dolor en sus tobillos por el simple hecho de querer llevar una vida como cualquier niño de su edad..pero gracias a Dios a la edad de 6 años buscamos ayuda en otro estado ,llegamos a nuevo león directo al hospital universitario buscando atención para mi Juan y así fue me dijeron que podía llevar su tratamiento y atención personalizada con hematólogo,trauma,genética…y fue ahí donde aprendimos a tratar la hemofilia cómo un padecimiento llevadero con sus cuidados y profilaxis pertinente ,agradezco enorme mente a la Dra. Villarreal encargada de la clínica de hemofilia y la Lic. Laura Páez nuestra trabajadora social que siempre nos llevan de la mano cada una en atención física y atención emocional ya que la Lic. Laura Paez siempre está al pendiente de que nosotros como padres seamos responsables y puntuales con esta atención para nuestros hijos …desde que llegamos a la clinica de hemofilia del hospital universitario nuestra perspectiva de vida cambio ,hoy por hoy se que mi hijo puede realizarse como cualquier otro adolescente y todo es por educarnos respecto ala hemofilia y claro llevar su profilaxis correctamente ..nunca perdamos las esperanzas …gracias
Hola buen día
Solo paso por aquí a saludar y a contar
Soy portadora Hemofilia Severa
Tengo un hermano vivo Hemofílico y uno ya fallecido
Dos primos vivos
أطيب التمنيات باليوم العالمي للهيموفيليا انضممت إلى الاتحاد العالمي للهيموفيليا في عام 2015 – في البداية كمدير إقليمي لإفريقيا والشرق الأوسط والآن أغطي الشرق الأوسط فقط. كانت السنوات الثماني الماضية رحلة رائعة للقاء العديد من الأشخاص الملهمين المصابين بالهيموفيليا والأمهات والآباء والإخوة والأخوات ولقاء الأشخاص في المجال الطبي المهني الذين يعتنون بهم والحكومات التي تدعمهم. من خلال هذه الرحلة ، تعلمت أنه من خلال الجهود التعاونية لجميع أصحاب المصلحة ، يصبح حتى الهدف الأكثر صعوبة أو بعيدًا ممكنًا. إن الجهود الدؤوبة لهذا المجتمع هي التي ستستمر في تحقيق اختراقات في توفير الوصول إلى العلاج لمن هم في أمس الحاجة إليه. استمروا في العمل العظيم. إنه لشرف لنا أن نلتقي بكم جميعًا ، ، وأن نقرأ قصصكم الجماعية وأن نعمل عن كثب مع العديد منكم وندعمكم بأفضل ما نستطيع
I wanted to share a really nice experience I had recently with one of our adolescent females, with Von willebrand disease, who has moved from children’s services to our adults.
She had seen our consultant in clinic & arranged to come & learn how to self inject DDAVP for period management, alongside starting tranexamic acid.
Asides from making me feel old because I remember her being born, her dad has Von willebrand disease and we look after multiple generations of her family, it was really great to spend some quality time with her going over her disease, access to care & teaching her how to treat.
About 10 days later she made contact and asked to come back and run through some bits. I thought perhaps I’d missed something with her self administration education but on arrival she produced a list of questions for me.
We proceeded to spend 45-60 minutes going through more details about treatment options, including an introduction to treating with Von willebrand factor concentrate if DDAVP did not prove adequate for bleeding control. We discussed how & when she can access treatment, other options for period management including the option for joint review in our gynaecology/bleeding disorders clinic, supporting her in university choices, holiday advice & general day to day advice & discussion about her condition.
Unfortunately this young lady fell victim to nearing adult transition during the COVID pandemic and therefore didn’t get the same options of regular joint appointments. Luckily with her family knowing the adult team well she felt comfortable coming in & discussing her options for access care & treatment.
At the end of the day, this is why I love the job I do, because these two conversations have been beneficial to the affected Individual & their parent in providing reassurance about their next steps in life & that we have other treatment options available. I was also able to let her know that the bleeding she was experiencing isn’t normal & we can help to resolve that as well as provide iron supplements to support blood loss until bleeding settles.
My Brain surgery with the help of Afstylia Factor support from WFH
Sankar@ Sanakaranarayanan
I am Sankar@ Sanakaranarayanan from Tindivanam, South India hails for lower socio economic group. In my child hood I was taken to various Hospitals for various treatments for my various bleeds and nobody diagnosed me as Hemophilia. I suffered many bleeds like oral bleeds, joint bleeds and muscle bleeds,and I, and at the age of 7 only I am diagnosed as Hemophilia A. I have 1 elder sister and 4 younger sisters and my 3 nephews are affected by Hemophilia A . Before 25 years there was no factor and all the way Plasma was transfused and it was given for all treatment and surgeries also. Later I found that there was a registered society in Madras for Hemophilia. So I and my 3 nephews registered in Madras society and we went for treatment in Madras Society.
Some years later I heard that Dr. P. Nalini, Professor of Pediatrics, JIPMER, Pondicherry (Retd) had started Hemophilia society Pondicherry chapter and I submitted all the documents of myself to Dr. P. Nalini and I became a Life Member of the Pondicherry Hemophilia society. I underwent 2 major surgeries and with the help of Factor from Hemophilia Federation India, New Delhi and also support given by Dr.P. Nalini, which are all Free of Cost. In the year 2018, I had severe fever and I came to JIPMER and there I was diagnosed as Malaria and due to Malaria I had blood clot in my brain and the clot was diagonised by Neuro Surgeon of JIPMER and open surgery was done in JIPMER, which was also Free of Cost , and full Factor support(Afstylia) was given by Hemophilia society Pondicherry chapter obtained from World Federation of Hemophilia, through Hemophilia Federation (India). After my surgery I was supported by Factor for 6 months as prophylaxis and I am fully recovered. In spite of various bleeds and I am fully recovered from IC Bleed ,and I am now normal. My family members express their gratitude to WFH , HFI (India) an Hemophilia society Pondicherry chapter
Thanks to all
E. Sankaranarayanan
M. NO. 53
Hemophilia society Pondicherry chapter
The Haemophilia Association of Mauritius wish you all a Happy World Haemophilia Day 2023. Access for all. Cheers to all our Heroes.
Rajesh Neelayya
President
Haemophilia Association of Mauritius.
As hemophilia caregiver , many positive stories are with me, but most exciting ones are : life of one child with brain Hemorrhage is saved with continuous and untiring efforts of his mother and now that child has normal actovity without any residual disabilty , it is really most satisfying event in my life as hemophilia physician and other adult patient came to my care when there was plan to have amputation of the leg and with personal care leg is saved .That boy had nailing a d plating for fracture without factor support
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
A l’occasion de la journée mondiale de l’hémophilie, j’adresse tous mes meilleurs voeux de bonheur, de santé, de courage et d’abnégation à tous les trois milles hemophiles d’Algérie et du monde entier. Je profite de l’occasion pour saluer le travail gigantesque et inlassable de mon équipe multidisciplinaire de l’unité Hémophilie et maladies hémorragiques héréditaires du service d’hématologie du chu Benbadis de Constantine. Je citerais entre autres le Pr N.Salhi, le Dr S.Kebaili, les MAT, les résidents, notre pilier Mr Bouabellou, nos dévoués Infirmiers, le Dr M. Mouloud Hichour , nos pharmaciennes Mmes Ghemired et Khadidja Chelali, les 4 grands laboratoires pharmaceutiques et bien d’autres personnes dévouées à cette noble cause.
On the occasion of World Hemophilia Day, I extend my best wishes for happiness, health, courage and self-sacrifice to all three thousand in Algeria and the whole world. I take this opportunity to salute the gigantic and tireless work of my multidisciplinary team from the Hemophilia and Hereditary Hemorrhagic Diseases Unit of the Hematology Department of the Chu Benbadis in Constantine. I would cite among others Prof. N. Salhi, Dr S. Kebaili, the MAT, the residents, our pillar Mr Bouabellou, our dedicated Nurses, Dr M. Mouloud Hichour, our pharmacists Ms Ghemired and Khadidja Chelali, the 4 major laboratories pharmaceutical companies and many others dedicated to this noble cause.
Pr N.SIDI MANSOUR
Happy World Hemophilia Day to the global bleeding disorders community!
Thank you for sharing your inspiring stories and let us continue celebrating this wonderful day for many more years to come…
Happy World Hemophilia Day!
We are blessed to have such a caring community full of blood brothers and sisters!
Happy World Hemophilia Day to all the Hemophilia families around the globe. Stay strong , never give up hope!!
Je suis GBAGUIDI Hugues. Depuis mon enfance, lorsque que je me cognais contre un objet, la partie s’enflait. J’avais eu plusieurs hémorragie externe qui prenait du temps à s’arrêter. Jusque là mes parents ne savaient pas ce que j’avais. Mais un jour toujours dans mon enfance, je m’étais coupé la paume de l’index droit et l’hémorragie avait commencé. C’est là que mes parents m’ont amené au Centre National Hospitalier Universitaire Hubert MAGA (CNHU). Les gens avaient tout fait mais l’hémorragie ne s’était pas arrêtée. Et subitement, mes parents avaient rencontré une étudiante qui leurs a indiqué le service du CNHU où on pourrait me traiter qui s’appelait SHIMAS. C’est dès ce moment qu’ils ont eu à faire des analyses pour savoir que je souffrait d’un mal:l’hémophilie. Dès qu’il y a une période hémorragique, la prise en charge était difficile en terme de coût. Mais dès que l’Association des Hémophiles du Bénin(ABH) a été créé et grâce aussi à la Fédération Mondiale des Hémophiles, la prise en charge est mieux. Notons aussi que dès qu’il y a rupture du stock des facteurs de coagulation, on retourne à l’ancienne méthode(le plasma) qui n’ait pas facile à vivre en terme de coût.
Grand merci à tous les donateurs qui nous permettent de vivre mieux. Longue vie à eux.
ABH: Traitement pour tous
Longue vie à l’ABH.
Longue vie à la Fédération Mondiale des Hémophiles.
The hemophilia community has had a long-time impact on me – several family members suffered from hemophilia. I appreciate all the stories of people thriving on this website! I know you will succeed!
World hemophilia day our day to celebrate and to create awareness about hemophilia condition to the world and to do advocacy for universal health from the government to get the Factor treatment
My younger brother Late Amit kumar was suffering from Hemophilia he was having deficiency of VIIIA since his childhood, initially he was having black marks on his body later started with heavy bleeding from his teeth and later all his body joints started getting swelled with big in size and black in color, he was on bed since last 25 years. Finally he died on 28 July 2015 after injecting plasma into his body. Still i cant believe he is not with us. Apparently my father also expired after few years because of shock. In India there is almost negligible facilities and awareness is there.I pray for the every hemophilic child or person to get well soon.
Le programme d’aide humanitaire du WFH a changé ma vie.
Heureuse journée mondiale de l’hémophilie à tous!
Juliana Howard Story (Mama Michael) – Ghana
Decades passed by , my son and I had to endure the nitty-gritty of the haemophilia disease.Inspite of the bleeds and pain he endured,I equally went through emotional trauma, financial difficulties,stress and above all the fear of the unknown always stared at me.l needed to devote my all and concentrate on him.Doing so wasn’t an easy task.I had to quit my job and stick to my God given talent,a beautician which also couldn’t stand the test of time due to his consistent crisis .
Many were the times I had to go in and out of the hospital,nurses at certain points jokingly would ask whether I didn’t like my place of abode,because not a single week passed without my son not being admitted at the hospital.My most saddest and painful moments were times when some nurses scolded and rebuked me for no cause instead of showing empathy .
l most of the time had to go through the agony to donate blood for him since he even rejected and reacted to the same blood group with the exception of mine.It became a worry to me, should the inevitable happen , what would be his fate?
But through it all,there was a compassionate God who gave me strength, courage, wisdom and a shoulder to cry on in my time of desperation and need.
And all victory belongs to Him.
To WFH, much appreciation goes to you for donating factors and training health professionals in developing and under developed countries.
We are most grateful and pray with this know how, No patient and parent will suffer my plight.
My special gratitude goes to my President of Ghana Haemophilia society for giving me the privilege to air and share my ordeals and experiences to others. I say bravo and more power to your elbow.
I can now tell my story. During this covid times, knowing the circumstances we are in, Michael(hemophiac son) and I have been mindful and cautious so as to avoid any unforseen conditions. I can boldly say the Lord has shown us a lot of mercy and can now share this story with out tear drops but with a heart of gratitude.
I have been a long-time supporter of the hemophilia community – several family members and ancestors suffered from hemophilia-A. It is inspiring to see all the stories on this web page of people thriving– keep on fighting the good fight! I’m proud of all of you!
I’m Nonhlanhla Sokhela 31 years of age from South Africa.i was diagnosed with Heamophilia A with Factor VIII deficiency in 2020 when i had my 3rd child.All along i never knew about the disease and never knew I had it.
I’ve had to take very expensive medications some which my medical aid refused to pay for but with the motivation from doctor they eventually agreed to treat my condition.But even then my factor book levels were very low.
Until my doctor put me on Endoxan with Prednisone daily then my levels went up to such great levels.Right now I’ve stopped taking medication for a month and then I’ll go back to take bloods to see if the boost on my levels is still there without the medication.In crossing my fingers.But either way im thankful for such a great community where we can share pur experiences with people who understand what you are going through.This is a beginning of new journey.
If you have any questions, please contact marcomm@wfh.org.
