English 
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.
Bonjour je suis Adje Dodo… mère d’un enfant hémophile.
Nous l’avons su mon époux et moi, dès l’accouchement, parce que l’enfant présentait deux bosses au niveau de la tête.
En effet, c’était le sang qui s’était coagulé à ce niveau.
Le médecin m’a alors demandé si dans ma famille on avait un problème d’hémophilie et j’ai répondu oui. Il m’a rapidement donné un examen à faire qui malheureusement ne s’effectue pas ici au Gabon, mais plutôt en France.
En attendant les résultats , quand le petit a atteint ses deux mois, nous l’avons circoncis dans l’ignorance.
Ce fût le début de notre souffrance, une chose à ne pas vivre.
Il s’est vidé de son sang et on va, depuis maintenant 4 ans, de transfusion en transfusion.
C’est un calvaire.
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.
Hi hemophia brothers and sister
Omar wish you happy hemophilia day
Growing up as a kid with Haemophilia was a pain. School posed a challenge to me as I used to wear full sleeve shirt and pants with cotton stitched in them near my joints so that I don’t bruise myself if I fall down, whereas everyone else had a different attire. Everyone considered me different, and no one wanted to be my friend. I was bullied because I was different.
To add to that, I could not go out to play with the kids my age and had to be stuck indoors. I used to get hurt, and the pain was unbearable and I wondered to myself, why me?
The constant loneliness and trauma played a major role in shaping my mental health. It made my personality strong, and I realised that just because I have a chronic disorder doesn’t mean that I am incapable of doing things that a normal individual can do. So even with my haemophilia, I played football, cricket, and various other sports which a person with haemophilia can’t even dream of playing. I have been on treks and partaken in other physical activities such as dance and drama.
Through the hard times, I found solace in books and music. Books made my imagination run wild and see the world outside the box. Whenever I was in pain, my guitar gave me company and It made me forget the pain. These two things have been an integral part of my life and has made me who I am.
I never let my haemophilia demotivate me. I always considered it a blessing and adapted to it. Through my indomitable attitude, I now embrace my haemophilia proudly and consider myself unique and capable of achieving anything if I put my mind to it. To put it poetically, my head is bloody but unbowed.
Soy hemofilico con hemofilia tipo A me la detectaron cuando tenia 2 años de edad. La hemofilia afecto mis articulaciones, por lo cual me causo artrosis tengo tratamiento profilactico del factor VIII.
Story of a Haemophiliac
Dear friends,
Today the 17th of April is World Haemophilia Day (Birthday of Frank Schnabel, a Canadian businessman born with severe haemophilia A and the founder of the World Federation of Haemophilia). So I, being a Person With Haemophilia (PWH), think this is the right time to share my experience with you all. (For those who are not acquainted with Haemophilia: it is a bleeding disorder likely to cause severe joint pains and consequent multiple deformities. The disease is incurable, but manageable under proper medical guidance.)
Son having born after two daughters in a middle-class family in the early 1970s in a small town, I suspect my parents’ face gleamed. But their happiness didn’t last long when they began to face rather unexpected and complicated problems with even my minor bruises within my first couple of years. With medical facilities incomparable with that of today in those days, I was diagnosed as a Person with Haemophilia after several trials. ‘Haemophilia’ was just a name made known to my parents; doctors suggested nothing else, barring the fact that I should be brought up CAREFULLY. None to blame; doctors whom we could reach, themselves knew very little about the ‘Royal Disease’ in those days.
Days went by, and my health deteriorated with it, following several bleeding episodes. By the time I was 14, I lost my walking ability. I would be literally picked up by my friends from the auto-rickshaw to my bench in the classroom. Went to the college in the wheelchair with the assistance of a guy. Spent countless sleepless nights owing to excruciating pain (painkiller was the only treatment I could get then).
Despite these serious setbacks, I never lost interest in my academic studies. I stood first in the class throughout my schooldays. Though I got over 90% in 2nd PUC, I couldn’t join any technical / medical course (I had the wish to become a doctor, though) owing to my extreme physical constraints, and joined the course of B.Sc (PCM). I was selected as a Postal Assistant when I was in the final year B.Sc well before the final exams. Went to Mysuru for postal training for 75 days (my health had improved by then, thanks to my age). Wrote the final B.Sc exams by operating from Mysuru to Arsikere. And finally, my sincere efforts paid off. I made the very Principal of my college, who, worried of my multiple, complex physical disabilities, had first denied to grant me a seat in PUC in the PCMB section, feel extremely proud of me. His college got a rank for the first time, and that too the First rank in B.Sc with a record scoring in the history of Mysore University. Perhaps influenced by this achievement, many ranks were recorded in the history of the college in the succeeding years.
Friends, I’m telling my story not to boast of myself (I’ve nothing to boast of either), but to instil confidence in the minds of fellow haemophiliacs. On introspection, I reckon my achievement is not mine. I owe it to my extremely cooperative friends and school / college staff, both teaching and non-teaching. It was because of them that I could overcome my physical constraints.
Now my family members: my dad, despite having known the fact that my mom was genetically responsible for my disorder and the consequent unending problems in the family, never ever resented on mom or her family. Hats off to him! He catered to my needs till his last breath. My parents and sisters all have stood by my side and have made my life comfortable to the fullest extent possible. Mom has been exceptionally patient in tolerating the pains with me. Can’t repay them at all!
Not to forget my colleagues of all cadre from Group D to Divisional Head. Their extensive support made me serve the Department for 14 years – long enough for my health condition (which had deteriorated by then); long enough to earn my bread. Many thanks to them too!
Lastly, but by no means, the least, Dr Suresh Hanagavadi and Mrs Hanagavadi of Davangere, like in the life of so many PWHs, have come all the way from their workplace to my home despite their busy schedule as well as Dr himself being PWH, and have ameliorated my sufferings. Simply great!
Well, this is my story. Life has changed globally including our nation to a great extent over these years. Awareness regarding the Royal Disease at least among the medical faculty has improved, but not to the extent in developed countries. It is still a long way to go. Facilities for an early diagnose of cases of rare diseases should be made available everywhere including rural areas. People should be educated about dealing with persons born with abnormalities; their support can build up wonderful confidence in the less blessed ones in facing life; I’m very lucky in this regard to get such an environment. And to fellow PWHs, this is what I’d like to say: It is you who have to suffer lifelong if you’re careless. So please lead a cautious lifestyle without venturing into strenuous physical activities. But don’t lose hope in life. Philanthropic achievers like Frank Schnabel and Dr Suresh Hanagavadi should inspire us all.
To conclude, I’d like to quote the lines of the German philosopher Friedrich Nietzsche: Pessimism is a sign of decay, optimism is a sign of superficiality. ‘Tragic Optimism’ is the mood of the strong man who seeks intensity and extent of experience even at the cost of woe, and is delighted to find that strife is the law of life.
May this quote be inspiring to us all in accepting life! Wish you all a bright future!
Regards,
Nagesh K
My son Jayden has Severe Hemophilia A and Von Willie brand type 1. We found out about Jayden’s hemophilia when he was 6 months old, when he started to crawl his stomach and elbows were all bruised. I kept being told by his pediatrician at the time that it was normal. I kept pushing telling them there was something wrong until one time he had a lump/bruise by his ribs and they told us he had a skin abscess and would be referred to a general surgeon to evaluate. I was not happy with the diagnosis since it wasn’t the only bruise/lump he had. On his 6 month check up I brought the issue to them again and was told they were going to do labs work just so I could be more comfortable but that she was pretty sure everything was ok and I was worrying to much since I was a first time mom. Two days later we got the call to follow up with hematology the next day. He was diagnosed with Severe Hemophilia A. He Got his port placed at 9 months. Life has not been easy since the diagnosis we have our ups and downs. Sometimes a lot of downs. After starting his factor infusions continued to always covered in bruises I thought it was normal, I was used to see him with bruises all the time. Summer time was the worst if he had shorts on we would get ugly looks at the stores. Then one day he started having really bad joint bleeds they decided to run more test and found out he had von Willie brand type 1. Right after that he was put on a factor product for hemophilia a and von Willie brand. It’s been more than two years from that and today Jayden is 7 years old and his life is almost as normal as any 7 year old with the exception of no contact sports and other activities that could hurt him. The bruises on this legs, hands and everywhere else he used to get them are gone, one here and there. I can definitely say life has given us some of the biggest lesson but we would not have it any other way. Jayden is the happiest little boy, he gets excited about going to the Dr.’s. he is probably the only boy at his pediatrician that doesn’t cry when getting shots because he’s so used to it. ER visit for him are normal he’s used to it and usually is a very good patient to the nurses. He is slowly learning more and more about his hemophilia and von Willie brand, and it’s very excited when he meets others with the same bleeding disorders as him
10 months ago I would not have really understood what you were talking about if you said “hemophilia”…since our little boy has been born and was diagnosed with hemophilia at 1 day old, many emotions have raged through myself… joy and tears, fear and humor, anger, resentment, anxiety, stress… but overall love and compassion… Seeing my whole family, my husband and our girls, my parents, step up and embrace this new normal has meant the world… as we continue on this journey, there will be so many more “World Hemophilia Days” in our future and I can’t wait to see what God has in store for us
Mi hija Luana Etchecopar Galarraga tiene 16 años y fue diagnosticada hace 4 años con deficit factor VII. Desde Paysandú Uruguay enviamos nuestros saludos a todos!
Hello everyone, I’m Manoj Kolukuluri a 20yrs young with severe factor-viii deficiency. I’m currently continuing my study in the Charted Accountancy stream. Now I’m going to share all my experiences and obstacles that I faced in my life.
Since my childhood I’m living in Visakhapatnam. My first injury started with a deep cut on my index finger, at that time my parents do’nt have any idea that I’m diagnosed with hemophilia. My parents came to know that I’m diagnosed with hemophilia at my age of 8 months when I got tested at C.M.C Vellore. After few days we came to know that there is a society for hemophilia in Visakhapatnam. Dr V. Chandra Sekharam ( The President ) and Mr K. Sai Baba ( secretary ) of the hemophilia society Visakhapatnam played a key role with my treatment of Hemophilia. They both helped me a lot during my bleeds by advising a proper treatment for me. I owe a lot to Hemophilia society Visakhapatnam.
Since my childhood I faced many severe injuries like head injury and also faced problem with my milk teeth. During my schooling all my friends and teachers well supported me. I used to stick mostly to the indoor games. Most of the time I used to tempt to play outdoor games but a thought use to strike in my mind i.e if I play outdoor I should take factor that day for sure, and that is burden to my parents and a nightmare for me because I’m a bit afraid of injections, so that use to motivate me for not playing outdoor games. After a lot of struggle during my preparation and exams with many bleeds I completed my schooling.
And next comes the college life where our thoughts expand to tremendous limits. At this point of time our state government has started to provide free factors for us and that’s it my thoughts has been completely changed. My wings had been opened and I started enjoying my life. This brought a major change in my life. For the next few months my number of bleeds has completely increased. So then I limited my enjoyment for some extent.
I took commerce stream in which writing takes a greater part. During the examinations it used to bleed in my shoulders, wrist etc. But with many struggles I finally completed my intermediate.
Next at this point of time we have to choose our career. There are only 2 options which rotated in my mind either B.COM or Charted Accountancy, and surprisingly I chose both. I’m completing my B.COM and Charted Accountancy parallelly.
Choosing them is easy but facing both of them at a time has been a nightmare in my life. I’m facing a lot of stress during my charted accountancy examinations and incurred many severe bleeds during the examination period, and I failed in my last 3 attempts of C.A examinations due to severe bleeds. But I didn’t give up my hopes. I cleared my C.A examinations in my 4th attempt.
If you have any questions, please contact [email protected].
