Accueil

Todo empezó cuando mi hijo Erick tenía 8 meses lo intervinieron quirúrgicamente era algo ambulatorio sin embargo de algo tan simple se volvió una pesadilla ya que 3 veces lo metieron a quirófano en 2 días xk pensaban que no había quedado bien asta que a alguien se le prendió el foco de porque tanto sangrado sin embargo mi hijo ya mero y no la contaba estaba muy débil le tuvieron que transfundir sangre plasmas creoprecipitado de todo y alfin salió de esa los doctores me dijeron que si no había visto algo raro antes de la operación y pues yo sólo les dije que le salían moretones pero yo le echaba la culpa a mi otro hijo que me lo mordia y pues resulta que no era así pues tenía hemofilia y pues yo no sabía que existía la enfermedad y de ai a sido muy difícil para mi porque por más que lo cuido se me a descalabrado se le han hecho hematomas y de todo un poco pero gracias a su medicamento no a pasado a mayores.

Vielen Dank an alle die sich heute Zeit nehmen um zu feiern!
Liebe Gruesse von Montreal,
Alain

Hola!!!

Soy Jaime Moscoso de Panamá, paciente con Hemofilia A con Inhibidores

En mi familia ya sabíamos de la hemofilia porque había tenido tíos con hemofilia, sin embargo, el escenario se hizo cuesta arriba cuando me diagnosticaron los inhibidores, han sido 21 años batallando con ellos, sin embargo, no ha sido un obstáculo para el desarrollo personal y profesional, al contrario me ha permitido aprender y compartir conocimientos y experiencias con los demás.

Agradezco mucho a mi familia, amigos y mis doctores (Rafael Joly, Rafael Aparicio, Dimas Quiel) por el apoyo que me han brindando y continúan haciéndolo para tener una mejor calidad de vida.

just a few months in the organization and I can say it is one of the best places to work. The culture, the challenges. It is all wonderful because everyone shares the same vision and is dedicated to the mission.

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 🙂

ABIRA MAHEEN
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.

Je suis mlle joanna missandzou mère d’un hemophile de 5 ans .vous savez lorsque le diagnostique tombe comme quoi votre enfant est hemophile vous êtes perdu désemparé jusqu’à ce que votre curiosité vous pousse à aller chercher “c’est quoi LHemophilie? ” .Après information vous vous rendez compte que c’est une maladie héréditaire grave qui se transmet de la mère à l’enfant et qui touche exclusivement les garçons. Vous devez faire avec, vivre avec, faire attention à tout car la moindre chute peut être grave chez un hemophile le manque de prise en charge de la maladie au Gabon rend la vie des familles des hemophiles et des malades difficile car s’il y avait une prise en harge leur vie serait meilleur, nous “parent ” se seryont pas toujours derrière eux tel un oeuf sur es mains de peur qu’il ne tombe. Aidez nous à faire connaître cette maladie dans notre pays car même nos autorités ne savent pas qu’ils ont des cas d’hemophilies dans le pays.

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.

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.

Ahmad Raza
HFP Youth Group Member
Volunteer HPWS RWP
Reg# 90