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.
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.
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…
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.
Je m’appelle Bouna Sow. J’habite à Nouakchott, en Mauritanie, je suis père de 4 enfants hémophiles de type A sévère. Ma femme avait déjà perdu son fils à Dakar, au Sénégal avant notre rencontre, en plus de ses deux frères.
Mes enfants étaient suivis au Sénégal avant. Maintenant, ils le sont ici. Mais surtout grâce à un médecin sénégalais. Nous avons souvent des facteurs, mais avec la covid ‘il y a eu des ruptures et c’était très difficile.
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 became a genetic counselor because of my family’s experience with hemophilia A. For World Hemophilia Day, perhaps it is appropriate to share my story.
I first learned about hemophilia A in my family and X-linked inheritance from my mother, who was a nurse, when I was about 14 years old. I remember the moment clearly. The idea that something at a molecular level could have such dramatic impact on a person’s health and on family relationships fascinated me.
I began to research genetics and learned about genetic counseling. My high school biology teacher helped me connect with the monthly genetics clinic run at the university. A friend of my mother’s invited me to join her daughter’s appointment.
I came across a non-fiction book called the “search for the Oncogene” which I now realize was a precursor to finding BRCA1/2 . That was it. I was hooked. I started researching genetic counseling and ended up training at the University of Michigan, graduating in 1996.
It’s 25 years later and I remain enthralled by molecular genetics and its impact on health. Sometimes I find myself breathing “wow” as I read about the genetic basis of disease. I feel thankful I have had a career serving patients and families affected by rare genetic disease and know that medicine and science are still in the very early stages of improving their care.
I am K. Aravind Nikhil, Severe Hemophilia A with Inhibitors from Visakhapatnam Chapter, India. I believe that though the entire world had changed its living pattern like living with loneliness due to COVID-19, our Hemophilia Community has not changed to loneliness, but shown its togetherness more strongly. Though we are following COVID rules and lockdown, we are committed to serve and save our Hemophiliacs by providing “TREATMENT FOR ALL”. I’m sharing my personal experience.
During this COVID-19 Pandemic and Lock Down situations also, the Hemophilia didn’t shower any sympathy on me and haunted me with Severe and Regular Bleeds. I had Self-Infused continuously and also infused the Missing Clotting Factors to my co-patients in our house. Though there is a severe threat of spreading of COVID-19 virus from person to person, I couldn’t remain calm when my co-patients from different places are suffering from bleeds and pain. My father had invited them to our house and taken all precautionary methods except physical distance. By God’s grace, our family didn’t get effect by COVID-19 though we had close contact with my co-patients while doing infusions. Both COVID-19 and Hemophilia are dreadful. COVID-19 is short time problem, but Hemophilia is life long problem. I hope that 2021 may be a “Ray of Hope” in the lives of Hemophiliacs. Thanks to World Federation of Hemophilia and Hemophilia Federation of India, for their support and help.
In this way I’ve adapted to change and helped the Co-Hemophiliacs during the typical COVID time and I thought it was my responsibility to help them and I’ve grabbed the situation with my both hands. I hope my story will help and motivate my Co-Hemophiliacs as well.
Am Francis mbahati from Kenya hemophiliac. I lack factor 8 in my blood. I have been suffering experiencing all simptoms of this illness. This has made me so much unworthy in my life since am not able to compete with my fellow friends in games and also in manual work which requires full body power. In school I suffered a lot of humiliations since I was always ailing most of the time one could see leaping, swollen joints. This made me to be absent so many times during my schooling.I sat for K. C. S. E on 2014 where got mean grade of C-. Finally in2019 I was diagnosed and found that I suffering from hemophilia where I lack factor 8. So in case of any injury I have been going to my nearest hospital to be administered for factor 8.My humble request to who have knowledge about the pain that patients with hemophiliac and other blood disorders undergo is that all of my life time I have been visiting different healthcare centers. This made to have a passion of me becaming a healthy worker.till I have not been able to get the required amount of money to be admitted to Kenya medical and training college. So my humble request is that anyone who is interested, willing and able to assist am willing to accept their contribution since you will be transforming my life. Thank you
Transformation after 20 years as a Hemophilic.
The year 2003 was the vintage year in my life when after the grueling 20 years I was diagnosed with severe Hemophilia-A. This was the time when I had fully apprehended the dismal consequences of Hemophilia. It had suffered me from multiple joint distortion at fore and hind limbs. But apart from these difficulties, there was a ray of hope for me in the form of two decades delayed diagnosis. It made me strong enough psychologically when heard about the treatment.
Since 2003 to 2007, I used to transfuse Fresh Frozen Plasma [FFP] from a local hospital. My uncommon blood group O with Rh-ive was perturbing and for most of the times, I was rummaging in the campus. A great breakthrough occurred in the late 2007 when I for the first time infused clothing factor concentrates [CFCs] after getting registration in PHPWS-Islamabad. Although I travelled more than 500 km per trip for a single infusion. This exhausting journey opened more doors of opportunities to do something for people like myself. The notion of Hemophilia Patients Welfare Society [HPWS] – Peshawar Chapter was realized and it met with practicality followed by years of hardworking.
The search to find out a remedy for hemophilia enabled me to get wind of many expedition. The transformation from a habitual absent student to a research scholar and to an officer rank government teacher strengthened me to serve nation builders. The metamorphosis from a helpless child to a Founder/President of HPWS-Peshawar Chapter and to Treasurer Hemophilia Foundation-Pakistan [HFP] empowered me to serve the bleeding disorders Community and the times when there was no treatment to FFPs and to CFCs thrilled me that accomplishment has no boundary.
Once treatment availability become sure for a hemophilic then he can manage his life in a variety of ways. Best choice of treatment facilities add more fuel to the activities of such person. Life produces more meanings when it is spending to serve other members in the community. Good treatment provides a best balance in life.