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cc salut je m’appelle Fabrice IKOU BIYOUKOU, je suis infirmier au Centre Hospitalier de Libreville (CHUL) je m’investis dans l’hémophilie et sur les personnes atteintes de cette pathologie depuis déjà deux ans (2 ans) auprès du Docteur Léonie Esther LEDAGA médecin hématologue, grâce à qui je me suis lancé et prends en charge quotidiennement ces malades dans le but de les aider à améliorer leur qualité de vie.
j’exhorte donc mes frères et sœurs gabonais à faire comme moi personnel de santé ou non, à soutenir les hémophiles pour apprendre à mieux connaitre cette maladie méconnue du grand public.
Agradece por ser especial!
Me llamo Ángel Quintero, fui diagnosticado con Hemofilia A severa a los 6 meses de nacido, ya tenia antecedentes familiares.
Por mi condición y la ausencia de tratamiento en mi País, tuve una infancia bastante difícil con muchos episodios hemorragicos, mas sin embargo, el apoyo de mi familia y mis amigos los cuales se encargaron de cuidarme, apoyarme y nunca tratarme diferente, hizo que ahora tenga muy buenos recuerdos de cada etapa.
Aun, hoy día a mis 35 años de edad, con daños irreversibles en mis articulaciones debido a la escasez de tratamiento, agradezco haber tenido y tener personas maravillosas en mi vida que hacen que a pesar de las dificultades halla podido lograr cada una de mis metas para llegar a ser un profesional y aunado a eso, hoy tengo una esposa comprometida con la Hemofilia que forma parte de la Asociación Venezolana para la Hemofilia (AVH)
y trabaja para mejorar la calidad de vida de todas las personas con la condición, ademas gracias a dicha asociación y al apoyo de la FMH actualmente recibimos tratamiento.
Por eso aconsejo a las personas con Hemofilia y cualquier otra coagulopatia a que siempre informen y eduquen a todas las personas que los rodean por que pueden mejorar su calidad de vida física y emocionalmente e incluso pueden llegar a salvarla.
Hello & Good day to all of my listener ,
My name is Zeaul Haq Parvez …I’m sever HEMOPHILIA A patient…I’m an active member of HSB (Hemophilia Society Bangladesh) Currently in studying in Hon’s 1st year & I’m 19 years old…..Today I trying to write about the most event full story of my life related to hemophilia….
Well my hemophilia disease was caught when I was 11 years old….Though I knew about it i didn’t think much about it….In my early age I used to live in village so walking running & jumping was basically my schedule …. But after that disease there was a lot of restriction but I still mange to get out by loop hole….Then at the age of 8 I came to city same as village less book more kick then one day i had a huge knee pain but after having few antibiotic my knee fell little better then same as usual as sport again pain life that 2 years coast but in my knees it started to accumulate blood but it didn’t sallow when the pain was gone and by time the bleeding started to became more frequent…One day after returning from my school I look at my knees I remember doctor said that there was blood in my knees so I thought that if i flow out all of the blood I will be all good…So i took a blade & unimaginable i cut my left knee there was blood flowing out of my knees I got scared so urgently call mu parents …they came rushing & took me to doctor fortunately I was a cowered that’s way i cut only a little bit…. but because of that I had a huge bleeding that was so painful that at midnight I munched an covered right next to my bad so hard that it woke both my parents & they came running to see me & at that time all my pain turn into frustration & anger I started to curse then because of them I had that disease & I had to suffer so much that …Upon hearing that tear started to flow from my moms eyes & she said nothing & went to hear room but I can hear her sound of crying from next door…My father was standing beside me he sat next to me…..He gently put his hand on my knees & said that “Son from next time please don’t hit your self coz it also pains us as much as it to you”….After that he went to his room & was trying to calm my mom….Next morning I had bleeding in my hand along with my left knee….But that morning I straightly went to my parents & said to them…what I said to them was unforgivable but still I want then to gave another chance to be a better son ….After that I had a lots of bleeding but never told them about them but some how they always find about it….After that I was meet with HSB that change my life for good…..
So much time passed but i still don’t know was my that foolish action was for better or for worse …….
I don’t have much complain about Hemophilia but I wholeheartedly have one that it took one thing away from me that I always look that’s…………SPORTS……..
Thanks All of You for listening to my story……
Born in an emerging country with severe hemophilia, factor VIII deficiency, and at a young age diagnosed with co-infection was like a nightmare. Upon knowing my disease related complications, the whole world collapsed around me. Hopes were shattered and life seemed to have come to standstill. I have smelled the changing behaviors in my relationships. Friends & colleagues started giving excuses for not socializing frequently. With age and disease related complications, family members may also become burdened by caregiving, and they may be affected by the stigma & discrimination often attached to the disease.
I have developed psychosocial issues and started visualized various ideas to suppress reality until finally I surrendered to God. First question that came to my mind was “WHY ME?” Then I thought for answers; “God only burdens those capable of bearing the burden”. I have gone through several trials and surely there was a reason…God examined me. Then I read; trials given to people are commensurate to the courage they have. Rather than be sad, I felt hopeful.
Putting my fears aside, with the belief that the future lies in God’s hands, I live each day positively, with courage to face the uncertainty of being hemophilic who has co-infection. I have seen life not as simply as others have; sufferings I faced have given me the strength to not only help myself but also others. “After psychological stability and coping with sense of inferiority complex, I have seen a positive change in my relationships towards others”.
My strong faith on God has helped me reconcile with my feelings of aggression and coping with psychosocial issues developed in my personality due to my disease related suffering. Social support reduces stress, improves treatment adherence and quality of life. Faith and emotional support may also help person to restore his reason for being and increased self-esteem.
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.
Salut, je m’appelle Zita, suis gabonaise et mère de deux enfants hémophiles de 18 et 8 ans.honnetement, c’est très difficile de vivre avec cette maladie mais on fait avec.d où notre combat au Gabon dans la création d’une association pour les hémophiles.
Salut, je m’appelle Zita EYANG, suis mère de deux enfants hémophiles A sévère de 18 et 8 ans.il très difficile de vivre avec cette maladie mais on fait avec.c est la raison de notre combat au Gabon dans la création d’une association.je dirai encore plus, la sensibilisation dans notre pays, car beaucoup parmis nous ne le savent pas et même en milieu médical.
Hi hemophilia family,i am Dr.varsha chaudhary from India(Gujarat).i am working with meshna chepter since 6 years..i found very seviour patients with hemophilia, however with good spirits and my every steps followed by patients as i m physical therapist.I always motivated them and put my all afforts to win this situation.All time win-win situation for me and hemophilia family….i love to spend my good spirits and time with treatment of these patients…. Thanking you…
My name is Palash Reza. I am 18 now. My father Mohammad Arif Ali is a wagon driver. Anyone who sees me will understand that I am suffering from a complex disease. I am a severe hemophilia B patient. My factor 9 level less than 1%.
After cutting my navel at birth, my bleeding was not stopping. That was my first sign. My parents knew nothing about hemophilia back then. Even no doctor in this district was able to understand my disease. From a very early age, I had severe bleeding in different joints of my hands and legs. I had narrow escaped from death many times. At the age of six, my father raised some money and took me to Bangabandhu Hospital in Dhaka, Bangladesh. There we learn about hemophilia. And we are informed about the fresh frozen plasma and factor of hemophilia. Prior to this I was not given any proper treatment. My father never could afford to buy a factor because the factor was too expensive. So the only treatment for bleeding is to get plasma in Dhaka. Which was very difficult and expensive for us. Many times I was brought to Dhaka in very bad condition. I was sometimes given direct blood. A few years later, a hospital was arranged to deliver plasma to a hospital adjacent to our district, which is 74 km from our home. That didn’t help me much either. Thus, I have never received any medical treatment in my life.
I started going to school when I was ten. There I learned to read and write Bangla. However for more than 2-3 years, I had no luck in school. Because I was completely unable to walk.
Every man wants a lot of success in life. Wants to be something much bigger. But to me, something much bigger is a normal life. I want to walk like everyone. I want to go to school like everyone else. I don’t want to play football on the playground too much, I just dream of going to the field and watching the game. Every morning I woke up thinking if there was anything that help me walk.
When I could not sleep through the night because of the pain, I repeatedly wished myself dead. I used to think about why living in such a life? I couldn’t even go to the bathroom by myself. My mother used to take me in her arms. I used to sit in a place all day. I did not have the ability to go a little under the open sky in the front of the house. I was just a huge burden to my parents. And they had to carry this burden until I died. I used to pray to God so that He would give me good life or call me. Even so, I can get rid of this troubled life.
During 2016, my condition worsened. I was taken to Dhaka. It was very important to give me a factor injection. There we introduced with a hemophilia patient and he gave us the news and address of the ‘Hemophilia Society of Bangladesh’. Knowing that there was a free factor, we immediately went to the Society office. There I was made a member and immediately gave me a factor injection. I recover very quickly. That day was one of the happiest days in my life. Since then I’ve been getting factor injections. It is like a dream to me because I could never recover so easily.
My family and I are very grateful to receive free factor injections from the Society. I am thankful to the Society and members of the Society Committee. Not only are they contributing through the factor, it has made me want to live. Now my suffering has decreased a lot. I want them to be healthy and keep helping me so that I can one day walk and work with them for my all other hemophiliac brothers.
Habib Al Fahim 18 years old. I live in Gazipur Bangladesh. I am hemophilia B’ severe patient.
Like every normal human being, I do not have dawn.
Almost haemophilia causes bleeding and severe sleep apnea.Most of the time I try not to tell anyone.Because my pain spreads to everyone in the family.Dad goes for plasma, mom goes for factor.The younger brother repeatedly gets busy bringing an ich bag.Father’s office is working, brother’s school is closed.The pain becomes worse as they think.Most of the time, parents do not have to get factor plasma.We cannot stand upright if there is bleeding in the knee or waist.In this case, we know how difficult it is to get plasma from a medical vehicle.I have been suffering since birth.Then all the healthy people are moving in line.I am unable to complete.If I received timely treatment, I would lead a normal life.
If you have any questions, please contact marcomm@wfh.org.
