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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.

السلام عليكم ورحمة الله وبركاته
أسعد الله أوقاتكم بكل خير
انا والد الأطفال غازي و ساري من مواليد السعودية وهم هيموفيليا B
ويعتبر المرض وراثي عن طريق الأم
ونعاني بشدة من توفر العلاج بالسعودية لأننا غير سعودين
واطمح بتوفر العلاج عن طريق الصليب الأحمر حول العالم بوظع حقيبة بها أفكار تساعد مريض الهيموفيليا ومن ضمن الحقيبة ساعة مثل ساعة آبل وبها أفكار ومعلومات عن حامل الساعة بتكنولوجيامتطورة ولدي أفكار أتمنى أن تتحقق ولو أستطيع الهجرة إلى الدول الأجنبية لفعلت لاني فلسطيني

Pédiatre exerçant depuis 20 ans, j’ai été confrontée à l’hémophilie pour la première fois il y a environ 6 ans.
En 2015, j’ai reçu un papa accompagnant ses deux garçons de 3 et 11 ans hémophiles A .Le plus grand avait été circoncis à l’âge d’un an, ce qui avait révélé la maladie devant le saignement important qui avait suivi l’acte. Le papa désirait réaliser la circoncision de son deuxième garçon et éviter le scénario vécu par le frère ainé.
A l’époque, je ne savais pas vraiment à qui l’adresser, alors je lui demandé de me laisser le temps de passer quelques coups de fils pour organiser cette intervention. Je me suis vite rendue compte qu’en absence de facteurs, une circoncision n’était pas possible . Je suis restée en contact avec la familles pour gérer les épisodes de saignement que l’on arrivait souvent à stabiliser par administration de dicynone et parfois plasma frais congelé…
En 2017, le soulagement est venu par une hématologue du pays ( devenue médecin référent) en collaboration avec la fédération mondiale de l’hémophilie ce qui a permis d’améliorer la prise en charge des patients hémophiles grâce à la disponibilisation des facteurs au moins pour gérer les accidents aigus.
Depuis lors mon petit patient a été circoncis après administration de facteur . Suites simples.

CC salut je m’appelle Fabrice IKOU BIYOUKOU je suis infirmier au Centre Hospitalier Universitaire 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, soutenir les hémophiles par le canal de l’association gabonaise d’hémophilie (AGH) pour mieux connaitre cette maladie

Life of a boy suffering from hemophilia.

I’m Feroz,haemophilia sufferer but my life never stops. Let me present to you the little idea of ​​my life.

Born in 15-03-1997. The current age is 24 years. At the age of nine months, at the time of hammering, he began to become slightly black in various places of the body, including knee, cunnies. Bleeding out of blood After taking three bags of blood, my blood stopped stopping. The doctor said that I have hemophilia.

Doctors also said that the cause of the disease is hereditary and the symptoms are where the blood will not stop when cut. Where there is an injury, the swelling will bleed inside the body so you have to be very careful. But they dif not say that there is any treatment for injection, plasma or therapy. Then many days, months, years go, we went to different types of doctors, there is no profit but loss.

At the age of 7, the left knee suffered a lot of injuries, then my left knee began to swell again and again at one point i have to use stick to continue my walk away. Stick around for about 6/7 years but at 2014 I will be in ninth grade one day my mother’s cousin will be my uncle. He will show me the homeopathic doctor. He used to see me for a long time and said that it was really good if i came before but it is still not too late. Without saying another thing, after I got hit by Ben, I could not walk better, but after his treatment he told me to take a stick with my armpits and then I started to walk slowly, knowing that before a year I learned to ride a bike. I didn’t even dream.I bought a bikeint 2015 and went to college every day for 5 km, and thus, when I started taking the HSC exam in my body was very impure from the second test day.

The homeopathic doctor’s medicine no longer working,but that way I passed the HSC exam and then I was admitted to Hons.

You know, when I went to infuse blood due to blood loss in the body, Doctor told me to go to Dhaka PG hospital. He also said that there were some injections that cost Tk 6/7 thousand they could have paid 4-5 or more but then my family did not have the ability to afford Tk 40-50 thousand taka.

What would you think if I heard one thing, I still knew in factor injection, plasma, therapy in 2017, but I didn’t try so well I was good at treating that homeopathy doctor. However, when his medication did not work after the HSC examination, I went to a doctor on December 24,2017 he told me the first thing and then I knew everything from the internet in just two days.

In 2018,I went to Dhaka, I was admitted to the hemophilia society, where I took a factor for the first time. Then i took some therapy and i got very good feedback, then after 10days i came back Dinajpur.

Society has played a big role in my recovery and they helped me many times with factor injections, even if they have a factor.

After coming from the Society, I followed them and since then I have been very good at the mercy of Allah.

Now i am Hons 3rd year student, I am also doing a job around for more than 3 years.

You know, my village now speaks a lot about me. How I was and how I am now. No one sees me and believes that I have such a big deficit.

There was a lot of thing to say but already its more.

You will never lose the confidence I have in asking for every hemophilia patient. Because your first motivator is you.In the world who have been more successful than you with their deficit and you should learn from this. There are many people with your disease and those who do not have hands, but they are leading a life. Did you know that a hemophilia patient won a silver medal in the Olympic bicycle race?

Greetings to everyone. Hope that the person who is reading my story is healthy and safe.
Myself Suvo Rahman from Jessore,Bangladesh. I am going to share a story which is occured few days ago. One day, in noon I suddenly started to feel stomach ache. My family thought it was just a normal pain. But with the passage of time the pain started to increase so extremely that i never experienced. Moreover I started to feel fever along with the vomiting. On the next day, i rushed to the hospital.By observing my condition, Doctor told us that it was a kidney infection. I tried to make them understand that i am a hemophilia patient and it is somehow related to any sort of bleeding in my stomach. But Doctor didn’t pay heed to me. They infused sleeping injection in me. They were giving me treatment on the basis of kidney infection but situation didn’t improve. That time the pain was so extreme that words will fail to explain it. i started to feel that i am going towards the end. But later on, observing my worst situation, doctor considered my word and gave me one bag fresh blood. In next three days they gave me three bag plasma on daily basis. Then I started to recover from that condition.

Thank you for patiently reading my story.

Myself Md. Abu Naeem & my age is 17. I am a student of class xii in a basic science group. I am from Bangladesh.

I am going to share my story according to my hemophilia situation. I have already known about my bleeding disorder because of my elder brother was suffering a lot from a bleeding disorder. As usually I was diagnosed when I was four years old. I am a moderate Hemophilia ‘A’ patient. At that time I was suffering for my gum bleeding but I had taken a few bags of fresh frozen plasma. In general, I felt disappointed with my own condition. Because I couldn’t play an outdoor game & I faced many social stigma due to my disorder.

One day confidentially I had gone to play cricket but unfortunately, I was hit my own right knee by my bat. On this spot, I was shocked for a few minutes. After that, I had gone through totally ambulatory conditions. I live in a village that’s why I didn’t manage plasma or factor concentration at the right time. So my right knee swelled up as much as possible. My family managed a few bags of plasma from Jashore in Bangladesh, but that was too late. I was suffering for my knee joint four years I couldn’t walk in a single step at that time. My family specially my dad was very supportive. During that period I continued my study from my home and my dad was bearing myself all of my exam period. Now I am fine for my good understanding related to a bleeding disorder. I am involved in youth activities in our country. Always I believe that if I grow my confidence level one day I will overcome all the difficulties.

Our Hemophilia Society of Bangladesh helps us all the critical situations while we faced any problem. Thank you Hemophilia Society of Bangladesh and World Federation of Hemophilia.

#HappyWorldHemophiliaDay

Soy el Dr. Ricardo Villegas Medico Hematologo de la ciudad de Cochabamba Bolivia , actualmente a cargo de la atencion de los pacientes hemofilicos de mi region, y dirigiendo el Comite de atencion del Hemofilico en Cochabamba, que esta conformado por profesionales afines a la atencion de nuestros pacientes. Actualmente nos encontramos abocados a la elaboracion de guias y tripticos .La capacitacion de profesionales, pacientes y familiares es lo principal.

Somos Juan Santiago y Augusto de Udaeta, de 19 y 17 años, argentinos, ambos somos hemofílicos severos Tipo A. Vivimos en la ciudad de La Plata, provincia de Buenos Aires, República Argentina.
A mí, Juan Santiago, me diagnosticaron la enfermedad a los 10 días de haber nacido. En el caso de mi hermano, mis padres sabían que si era varón sabían que existían grandes posibilidades de que fuera también hemofílico. Al principio fue difícil, fuimos siempre muy inquietos y Papá y Mamá muchas veces tenían que salir corriendo con alguno de nosotros para el Hospital de niños “Sor María Ludovica de La Plata”, pero a medida que creciendo todo se hizo más fácil. Mi Mamá, nos aplicaba el FACTOR VIII, tres veces por semana en nuestra casa. Ahora me aplico sólo, pero mi hermano se resiste a aplicarse y le pide a mamá que lo haga. Estoy cursando en la Universidad Nacional de La Plata, Facultad de las Artes, la carrera de Diseño Multimedial. Mi hermano, Augusto, está en sexto año de la secundaria. Tuvimos nuestras idas y vueltas con la enfermedad, especialmente cuando sentíamos que nos decían a alguna cuestión que “No”, como por ejemplo, cuando quise hacer Taekwondo o mi hermano quería dedicarse de lleno al tenis. Pero lo superamos en familia y seguimos adelante, con el apoyo constante de nuestro médico de cabecera, el Dr. Oscar Torres, que nos acompaña desde que éramos muy chiquitos.
A veces da mucha bronca lo limitante que puede ser la enfermedad, pero, los desafíos son enormes y siempre los enfrentamos. Esperamos que cada día exista algún avance científico que nos permita aplicarnos menos veces el Factor o que sea mucho más sencilla la aplicación, o mucho más espaciada en el tiempo. Sabemos lo grave de nuestra enfermedad, pero seguimos incansablemente adelante.

Hi, this is Remo from Pondicherry, India doing my final year B Com, suffering from hemophilia A. As a child i never cared about it until it affected my joints and i had to skip classes at my school and couldn’t participate in any sports.

The factor availability was restricted in my area and i had been bed ridden for more than 6 months during which time i felt so lonely. I never left my hometown due to this, but slowly due to continuous support from the chapters, regular exercises and improved medical facilities now I’m quite fit. Now I’m doing my degree in a college far away from my hometown and my factor intake has reduced considerably.

I also volunteer in my chapter as youth secretary and as a facilitator in National youth workshops.

Hi

I am Maxine Stander from Kimberley, South Africa. I am a 24 years old and I was diagnosed with Factor XIII deficiency when I was about 1 years old. I am the younger of two daughters and I am the only one that has been diagnosed with Haemophila. Although I have been aware of my diagnosed for basically all my life, I have only recently come to terms with my diagnosis and have undertaken to raise more awareness in my community by sharing my experience and educating with others.