Discover stories about how bleeding disorders have affected people and their loved ones.
Découvrir les récits sur la façon dont les troubles de la coagulation ont impacté certaines personnes et leurs proches
Descubra cómo los trastornos de la coagulación afectan a las personas y sus seres queridos
It is an honour and privilege to work with the global bleeding disorders community. I am constantly inspired by the generosity, kindness, expertise, resourcefulness, and compassion of its members. Working with and for you is so rewarding, thank you everyone for bringing so much meaning to the educational materials that we build and share together.
My son has severe Hemophilia A. It has taught him so much about being brave, resilient, and strong. I’m thankful for the support of the bleeding disorders community!
Շանկանում եմ ձեզ շատ երջանիկ և առողջ հեմոֆիլիայի համաշխարհային օր
Աջակցեք հեմոֆիլիայի իրազեկությանը այս օրը և կօգնի կանխել արյունահոսության խանգարումները մարդկանց շրջանում:
I think it’s great that our team can still be out there for our community during these very interesting times – keep up the good work everyone!!
Initially I used to think growing up with Hemophilia is very difficult. I thought i wont be able to be like normal person. I wont get a chance to roam, I wont be able to mingle with various people, I cant go on treks, because my childhood wasn’t normal. I overcome lot challenges since birth. I’m born in middle class family, facing heavy financial difficulty, upon that this hemophilia added more challenges not just to me but to my parents and my siblings. I wasn’t having friends till my degree. The very crucial time for me was continuing my studies during childhood because of finance and health. But however we used to manage, But very bad impact on my life was loosing my world when i was at 8th standard, I lost my mom.I was blanked out , didn’t know what to do, But i never left my life to go down, I never gave up. I continued study. I received lot of scholarships from Save One Life and many donors, whom I can never forget till my death. But again my life wanted to test me when I was in first year degree, it took even my dad from me. I did not know what to do. I lost my two pillars of life. I started becoming angry on my self and used to think, How cursed I’m. But i never gave up.
I started to live with my grandparents and continue education. And Now ! I’m pursuing my Final Level of Chartered Accountancy course. I want to prove to my life that it can never put me down.
Since I started receiving factors when I’m in need from my degree first year, my health condition is lot better. I’m able to travel and do my studies. I’m able to do physiotherapy, go on trips with friends. I’m very thankful to SOL, Manipal Hemophlia Chapter and Kannur Hemophilia Chapter and the government for providing me Factors.
Since degree I started particpating in Hemophlia related activities,annual meets, camps etc. Now I’m happy that I’m the youth leader of Manipal Hemophilia chapter and i could conduct workshops and I’m able to participate in HFI’s activities.
I just want to say one thing to all my blood brothers that, never stop your education just because of hemophilia and never give up.
Now I’m not worried because of hemophilia, I’m sure that i will succeed in life.
Thank You 🙂
My son Ethan was diagnosed with Hemophilia b just after his 1st birthday when he tore his frenulum while learning how to walk. He bled for days (so gross!) and we were told many times this was normal by a dentist, but when we kept calling back they finally referred us to a pediatric dentist who knew almost immediately he had a bleeding disorder. He was .1 point away on his hemoglobin level from needing a blood transfusion when this happened. Talk about scary!
We had our suspicions that something wasn’t normal when his bruises would have a hard center and when even the smallest bruises would take over a week to go away. We were continually told this was normal by his original pediatrician and that these were calcium deposits. Now I know better to trust my mom intuition! Being a first time parent is hard and it’s taken a long time to NOT trust a doctor’s first opinion. If you’re reading this-do your research on everything if you have even the slightest doubt the diagnosis is wrong.
Skip forward 3 years and Ethan is thriving! We do prophylactic infusions of factor 9 every 2 weeks through a port at home. We can almost tell immediately when he is in pain, has a bleed, or when a fall is -just- a fall/injury and there’s no need for an ER visit. I’m thankful everyday for our access to this treatment!
Bonjour je suis
Louis Davy, étudiant dans une école de gestion, j’ai 27 ans et je suis hémophile de type A.
Cette maladie a été identifiée dès mes 6mois.
En effet après une chute, j’ai eu l’apparition des premiers hématomes.
Mais avec le temps j’ai su m’adapter par rapport aux autres et j’ai fait plus attention à ma santé.
Cela a sous-entendu un autre mode de vie notamment pas de jeux brutaux ou des sports de contacts.
Ainsi, parce que cette maladie est méconnue du grand public au Gabon, avec l’AGH (Association Gabonaise Hémophiles) je compte faire entendre ma voix.
Hello Everyone, my name is Hina Fatima, student of MSC microbiology. So yes! I m suffering from hemophilia (vwd) Factor 8 deficiency. My diagnosis was on when I am only 5 years old and the cause is the Nose bleeding or bruising on my body every time even due to the hard touch. In start at that time I remember the nose bleeding is very much irritating thing for me its is very difficult to stay on bed all time and specially the smell of blood is just like every where I can’t eat food just because of this smell. My parents take care of myself every time, but every time care I don’t like at all because I not mature enough to understand the situation, so due to care these accident in which nose bleed or bruising happened are limited but even I reached on grade 10 before my exam I experience for the very first time menstrual bleeding, and that bleeding is not normal nor like that I listened from other girls after 2 day I am in hospital emergency and my hemoglobin level is on 3.. something so that is very critical condition of course After 4 blood bottles or factor transfusions I am on stable condition, my life suddenly take a turn even I am not ready for it even at that time I m dreaming about join air force or doing MBBS, but I realized that these things are not possible for me due to this condition doctor strictly told me to take rest and I continuously think that is this again happened in coming months. Very painful or hurting part of my life all those days, crying in dark rooms and nothing do with it. But with passage of time I think that I can’t change the reality whatever I can do so I started accepting it, take it in positive way meeting with other who having same problems but they were happy, so l learn who to live happily, busy my mind in other activities more concentrate in studies, started thinking about the more better way of treatment do research on every possible way, so you just say I just move on, some things continuously hurting you like being a girl it is not easy to discuss openly that your menstrual bleeding is not stop… but I try to avoid it what other people say some people help you some try to bow down you, so its depend upon you which path you choose crying on a dark room or live in a healthy sunshine.
Childhood I belong to a village. I am 28years old, I have type 3 von Willebrand disease. I was diagnosed at about 6months old, after losing my milk teeth bleeding didn’t stop. My elder sister already died due to VWD.i have 3sister I am on the third number my younger sister also has VWD.my parents never overprotect me. I don’t get injured during sports at home or school due to taking care of myself. companions and school teachers are very prudent. The main problem with me was gum bleeding. I suffered a lot due to gums and teeth problems.
Challenges My first period arrived when I was 16 years old. a month before starting my matric annual exams. bleeding becomes heavy that I left puddles of blood wherever I sat or slept.i spent a month in the
hospital receiving blood transfusions to replenish lost blood and iron tablets for the resulting anemia. My parents were faced with two treatment options, either monthly blood transfusion in hospitals or starting me on the combined contraceptive pill.i was the young of my two sisters and my youngest sister also have VWD my father was retired PAF., my parents decided the pill treatment would be the best option. Back then it was not common practice to involve the child in such significant decisions. I Never give up and continue my studies. I also started a diploma in cloth stitching.after my diploma completion I started teaching in my village school. Another life-threatening accident happened on 18 July 2019. I feel a little bit of abdominal pain due to constipation which goes severe in two days. my parents, and hurried into the hospital. After the blood test doctor said her HB is 4point., I was sweating and the faint frequency after the ultrasound doctor diagnosed that I have intestinal bleeding due to constipation.
I was shifted to the ICU. factors, FFPs, CP gave as a treatment to stop bleeding .many of my family members thought I could not be anymore because hearing the name of ICU everyone was saying that it was difficult for me to survive but by the grace of ALLAH I started recuperating and after one month I was fully recovered. Social issues. My medical condition is no secret, all of my relatives and our community know about it. Looking back I don’t care that they knew.it was the misguided views and assumptions that we’re made about it that caused the heartache. Rather than making the effort to understand the reality of medical conditions. It’s easier for people to jump to the conclusion that it’s something debilitating and crippling once people know, all that can be seen is the
medical condition they don’t see for the person you are.i have no brother, in this community people’s thought parents are hard-luck who have only daughters and if daughters are patients then you all of understanding what the society thinks about us. Growing up I often heard comments like oh’ she’s the one who is ill, she has the condition and worse, she can’t get married. wherever you go, whether it’s a wedding, funeral or any other family gathering people’s look at you and you know they are talking about you. The more you hear these comments the more you start to believe them to be true. Education and career After bachelor, I started a masters degree in special education .i faced many health issues during the study, I started work at school as a principal, which built my confidence to further my education and career .my patents and also other family members encourage me a lot .they all made me sure to drive problems and became an independent woman. Betterment in my health and life. I stopped taking the contraceptive pills at the age of 24. To my surprise and delight, I developed a normal menstrual cycle. My period was not heavy at all and lasted 7days. With care and medication, my gums become healthy and now a very small chance that my gums can bleed, Which didn’t require factors or FFPs. Treatments. Now I manage my bleeds at home using basic first aid techniques and tranexamic acid if I need it, in case of emergency I visit my hemophilia center which is quite rare now. I take iron tablets
regularly to maintain the HB level. by the guidance of hemophilia society, they trained their patients on how infuses factor to ourselves and I can do this at home. MOTIVATION Difficulties in our life don’t come to destroy you but to help you realize your hidden potential while it’s taken me a long time to learn a lesson.life with VWD really is what you make it .its my faith in ALLAH that has got me where I am and motivates me to rise above my bleeding disorder. our hemophilia center provides us many opportunities that how we manage our lives and meet with other patients like us are a great motivation for all of us. .MESSAGE FOR ALL MY FRIENDS. You can live life and do what you want in spite of what you fear and worry about. You can put your disorder on the back burner, live life one day at a time and try to make the most of every moment. life is very beautiful to enjoy it fearlessly.
Joint secretary Haemophilia Foundation Pakistan
President Youth group Haemophilia Patient’s Welfare society Rawalpindi
Von Willebrand disease
I am 25 years old and a final year medical student. Most of the people don’t even know what this
‘Von Willebrand disease’ means and neither did my parents or my family until I was born. I was 45 days old when I was diagnosed as a case of this disease. It a bleeding disorder where the blood has an impaired clotting system. As a child having impaired clotting means the parents have to be extra vigilant to take care of their child. My childhood has been a bit different from other children with frequent bleeds and visits to hospitals. It’s strange that I always wanted to be a doctor and a teacher but I have always hated hospital. Seeing my parents always by my side, seeing their struggle always motivated me. I always wanted to make them proud. I wanted to work hard and set an example for other people like me that not living with this is not an option so it’s better to accept it and move on. I was active in school and college being part of the student’s body as well as in extracurricular. I was able to secure first position in whole of UAE in matric and second in FSC in UAE. Success is not a road where you walk on roses, my dream was to become a doctor and that was shattered when I was unable to get admission in gov sector medical college. It took a year almost to get back on the track and prepare again for the entry test and finally I got admission and that was a bid step towards my dream. I joined Haemophilia Patient’s Welfare society to move towards my goal and I am working as their executive board member, youth group leader and women group member. I am also working for people with bleeding disorders at national level as joint secretary of Haemophilia Foundation Pakistan. I hope to become a great haematologist plus I also want to make an organisation where people like me will not only get treatment but education and other opportunities as well where they could work on self-development and play their role in society, become role models.
I am Ahmad Raza, 21 years old person with Hemophilia A (moderate). I am eldest son of my parents, born in Rawalpindi Pakistan. When I was 11 days old I had my circumcision which bled a lot but stopped luckily without any special treatment, my parents and doctors couldn’t get an idea that I am suffering from serious disease so they treated me like a normal kid, sometimes I would get bruises on my body, but they never took is serious.
When I was 8 months old, I got my first bleed in mouth as it got hit by a bucket and this time also it stopped with just a stitch so again hemophilia was not diagnosed. I was 2.5 years old when I was injected first Factor-IIIV for my muscle bleed somewhere near the kidney. I was diagnosed with hemophilia, but my parents did not know about any hemophilia society or such NGO they only knew that Factor-VIII or FFP. With the help of Allah my parents managed my bleedings with Factor-IIIV even though its market price was very high and not easy to manage for my father as income was very limited.
One morning my mother was watching TV and Dr. Tahira Zafar (Director HPWS RWP) was sitting in a talk show on hemophilia day briefing the symptoms of this disease which were all found in my, it clicked my parents and they took me Hemophilia Patients Welfare Society Rawalpindi. I was registered at age of 6.
My life has been full of challenges for me and my parents both. When my parents took me to Government schools for admission, they refused to give admission as I am suffering from bleeding disorder and require special care. A private school finally agreed to give admission, but the school fee was very high which was difficult for my father to pay as the income was very limited, but he still managed. I would get minor bleeds almost every week and sometimes serious bleeds which was also a big hurdle for me to manage my studies but still I was always in the top 5 of class and get awarded scholarships due to good result.
During the board exams of 10th class my writing hand got numb and I couldn’t even hold a pen or write, nobody was being able to figure out what happened still I managed to clear the exams and scored 80% marks. I took admission in college and my college life was also very challenging due to my disease but again with help of Allah and continues struggle and support of my parents and doctors I was always successful to overcome all the hurdles.
I am in university now doing my bachelors in English literature form International Islamic University Islamabad. I worked in a call center for 6 months and I give tuitions to children.
I have one sister and one brother, my brother is also suffering from Hemophilia A (moderate), he had two major surgeries at little age but by grace of Allah he is studying and we both are living a normal life as others.
Sometimes I used to get very discouraged due to reactions of people around us, my classmates would make fun of me when I would go to school with a bleed, sometimes teachers used to punish due to absents or late homework submission, not understanding the fact that I am not a fit person. I still get upset sometimes when I see people playing sports but I cant because Hemophilia does not allow me to, still I am happy in my life and especially when I see some hemophiliacs around me who got deformities in joints because of continues bleeds I say thanks to Allah, my parents and my doctors as today I am physically totally fit and living normal life due to them and I believe this is my biggest success of life. HPWS RWP and HFP played a major role in brining me up to a live a normal life.
I am working as a volunteer in society and at national level with HFP for my Hemophilia family, always trying to do the best I can and starving to do even better for them. I want to be get highly educated and get very high post so that I can do a lot better for future of Hemophiliacs not only in Pakistan but around the world, this would be my biggest goal and success. My parents also volunteer for this cause, my mother served as HFP women group member and my father is HPF NEC member and EB member in HPWS RWP. I am very happy and satisfied with my life Alhamdulillah.
HFP Youth Group Member
Volunteer HPWS RWP
Je suis Mme MALOUNDOU NBEMBI Dominique Angèle maman d’un petit garçon hémophile.
A l’âge de 4 mois, il avait des bleus qui lui sortaient sur le corps.
Je me disais que c’était passager jusqu’au jour où il est tombé et s’est blessé la gencive. Il avait déjà 11 mois quand l’incident s’est produit.
Il a donc perdu beaucoup de sang et a on a dû lui transfuser trois poches de sang.
Samuel était à deux doigts de nous laissé. Imaginez dans quel état ,nous les parents, étions c’était pas facile pour nous. Nous avons fait les examens et c’est de là que on a su que Samuel était hémophile.
C’était très dur à accepter car on ne savait même pas que cette maladie existait, encore moins au Gabon.
Donc au travers de ce témoignage, nous voulons que l’hémophilie soit pris en charge dans notre pays.