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.
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…
¡Papa es posible que su hijo tenga Hemofilia!
Con esas palabras salimos de la emergencia de una clínica privada, con mi hijo de un año y medio. Después de pasar por salas de emergencias de hospitales y clínicas sin que los doctores atinaran porque el sangrado profuso por un corte en la boca. Esa palabra nos quedo en la mente y empezamos a investigar, hasta ese momento solo había escuchado de la Hemofilia como una enfermedad de reyes en Europa.
Ha sido un camino largo, consultas, pruebas, miles de pinchazos a los cuales Jeremías no se acostumbra pero ha aprendido a sobrellevar comprendiendo que es un niño con una condición muy especial. Actualmente mi hijo tiene 8 años, este camino nos ha llevado a conocer la Asociación Venezolana de Hemofilia y su sede en el Banco Municipal de Sangre, pero lo más importante a una familia extendida, con doctores, otros PCH niños y adultos que se han sumado a la causa para luchar por el derecho a la vida en un país que día a día se desmorona.
Como Familia creemos firmemente en Dios y de allí recibimos la fuerza para seguir adelante confiando que la vida es dada por El. Pero también agradecemos por todo el esfuerzo del personal de la AVH y de la FMH para lograr mantener la profilaxis a los niños PCH de Venezuela.
I am Efad Safi Islam, a hemophilia patient from Bangladesh and the student of class 12. I am currently working as a youth member of the “Hemophlia Society of Bangladesh”. Today I am going to share my story of being a hemophiliac.
Life as a hemophiliac was never easy for me. But also, it was never too hard. After my birth, me and my family faced a lot of problems because my family did not know how to manage and treat haemophilia patients as there is no other hemophiliac in my family.
When I was only 3 months old, a bleed occured on my right chest. As I was only three months old, I couldn’t express my pain. I cried all night and all day in pain. My parents took me to a local doctor and he prescribed some antibiotics and painkillers. I didn’t get any specific treatment and after suffering for almost a week, I recovered.
Another incident took place when I was 8 months old. there was a severe bleeding in my right elbow muscle. Some superstitious people told my parents that my shoulder has been dislocated. So my parents took me to a woman who was said to know how to fix dislocated shoulders. When my parents took me to that woman, she stretched out my hand. And how much that does that pains only a hemophiliac will understand. And as I didn’t get any kind of proper treatment, I had to face that kind of pain 10 to 12 times a year. This continued for almost 1 year.
When I was one year old, a Japanese doctor first suspected that I could be suffering with hemophilia. He did some tests and we found out for the first time we found out that I was suffering with hemophilia.
And after that, my life started to change. I became a member in that “Hemophilia Society of Bangladesh”. And from there, we got guidance about how to get treatment and how to manage patients with hemophilia. By the grace of God, I am now living almost a normal life.
I think the PRICE-M ( Protection, Rest, Ice, Compression, Elevation and Medicine) treatment helps a lot in the cases where factor concentrates are not easily available. Thanks to the “World Federation of Hemophilia”. Under their humanitarian aid programs, they are sending factor concentrates in those countries Where factor concentrates are not very available. Which comes as a relief for the hemophiliacs of those countries. Good job, WFH.
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.
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.
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.
An expression of thanks
September 11, 1977, I (Ashutosh Sharma) was born in the capital of India, Delhi, there was a wave of greetings in my house because after five years of an elder sister a boy was born.
In those days, birth of a boy was given great importance in India, his family’s dreams were associated with his birth that he would grow up and decorate our family’s future but destiny had a different plan for me.
When I was 9 months old, I fell from the bed and got an injury on my forehead. Post this, one night I found my head swollen like I had a blue ball attached to my forehead which used to hurt a lot. My parents consulted many doctors and they gave me medicine but it seemed to be of no use back then. The doctor decided to do an operation of that blue swelling and when he did the puncture in my forehead, he saw that it was filled with blood from inside. He changed his decision and prescribed me pain relief medicine and gave it to my mother and told her to keep me at home and let him rest, it will be cured on its own. After a few months, that wound started to heal and I started living with this unknown disease.
As time passed the condition worsened. It started to bleed from my mouth probably the gums while I was sleeping at night. It filled my mouth with blood and all my clothes and bedsheet were covered with blood. By morning my mouth was completely closed with blood. My mother slowly removed the blood clots from my mouth with wet cotton and after cleaning the clots I was able to open my mouth to eat something. A few minutes later there was a series of bleeding, sometimes severe pain in my elbow or soreness in the knee, and the surprising part was that we were completely unaware about what was really causing it.
When I started going to school my mother would take me but after a few days again the pain and swelling started in my arms and legs and I was no longer able to go to school. It used to happen many times with me, every kind of medicine was administered but everything remained ineffective and there was no improvement in my condition. When I was 9 years old someone told us that All India Institution of Medical Science (AIIMS) in New Delhi is a very big hospital and you should go there for his check-up. When I went there they got my blood tested and a doctor who had taken the training of Haemophilia diagnosis from Italy examined me and told us about the disease named Haemophilia-B. He said that there was no treatment in medical science for haemophilia and it could only be prevented by plasma and blood transfusions. At that time AIDS was very widespread in the world due to blood transfusion and my parents decided not to transfuse blood in due to the ongoing condition. Doctor told us that I had to avoid all kinds of injuries. After the advice given by the doctor, my father lost confidence in me and agreed to keep me at home for the rest of my life, but my mother did not lose her courage and continued my studies by appointing a tutor and my mother kept taking me to school from time to time to get the annual examination. My school life continued with pain and whenever I had a joint pain I could not sleep all night and kept screaming with pain. I kept crying all day and night in pain and made the situation so difficult for me to move ahead. When I was 16-17 years old, I was playing with my friends when I mistakenly hit my head against the wall and it caused deep internal bleeding in my brain. I was brought to Delhi from Jind (Haryana) where a friend of my maternal uncle had heard the name of this disease and informed us about the Haemophilia Society, Delhi and there for the first time in my life I got the life-saving drug called Factor 9 which was injected in my veins and that factor was given to me for 10 to 15 days. At that time the cost of these injections was high and it was not easy to afford for the middle class, but to save my life my father sold his precious land and my life was saved. Due to brain haemorrhage half of my body was paralyzed and it took me one year to become normal.
After that day whenever I had bleeding in my arms, legs or shoulders my father used to buy factors from Delhi Haemophilia Society and got me injected. Sometimes we were unable to buy it due to lack of money and I had to struggle again with unbearable pain but every moment in this fight my mother was with me as a boon which is why it is rightly said “God cannot be everywhere so he created mothers”.
Now I had to move from my city to Delhi in agony again and again for factor infusion whereby my parents decided to permanently shift to Delhi after seeing my illness. After 1 year I started my own business of clothes in a famous market in Delhi. My business went very well but one evening while I was returning home from the shop I met with an accident and my hands got fractured and I suffered a lot of injuries. I had to purchase factors in bulk and was quarantined at home for 8 months. My new business and my hope both shattered due to my health issues.
We left Delhi sometime after and came back to my ancestral home, Jind (Haryana). In 2000 my mother became a municipal councillor of our district and I joined her in social work. After a few years suddenly I got another brain haemorrhage and got admitted at the Lok Nayak Jayaprakash Hospital in Delhi. From thereon I started getting free factors from the government hospital and they injected Factor 9 for several days to improve my injuries. After a lot of effort my life was saved once again,
In 2005 I got married to Jyoti, her family was told all about my illness and Jyoti knew everything and agreed to give her consent for marriage.
In 2006, I was not aware of the investigation of haemophilia in the womb until I was blessed with a girl. My whole family was engaged in celebrating the happiness of my new-born child. Everything was going well in my life and then one day I had a severe pain in my head and began to vomit. After a CT scan we found out that I had suffered from brain haemorrhage for the third time and then the long and painful process. I recovered from it for the third time but my whole family had to bear the mental depression at that time. After a few months, life became normal again and I kept myself busy with my daughter and family, till then my both hands, knees and right hip had worsened by 70 to 80% due to repetitive episodes of internal bleeding. My wife took really good care of me and used to suffer with me though day and night. She encouraged and prepared me to face the challenges of this life. After marriage my mother was able to take some rest from household work otherwise it was becoming very difficult for her because her health was also deteriorating.
In 2010 we had another girl and now I used to do more work to live my livelihood and kept myself busy but the pain returned after sometime and there was bleeding with terrible pain and my whole work and efforts went in vain.
One day in 2014 I got the idea that now I had to do something for other haemophilic patients who were like me so that the pain that I suffered in my life should not be experienced by them. During that time the factor 8 and 9 were unavailable at our local hospitals and anybody who had an episode of bleeding had to travel all the way to Delhi. I started trying to solve this problem with the help of God and my family, I found all the patients of my district who were like me and started a movement in which me and all my colleagues protested to get factors in our district hospital by writing a demand letter to District and State administration of Health Department. With hard work and efforts we got the success and were successful to avail the factors in our district hospitals. Though the factors were availed but the regular supply stayed affected and the factors were not inventoried but always fell short at the time of need. In 2017 we formed our own Haemophilia Society, Jind in which I was elected as the President with the unanimous consensus and then we succeeded in getting affiliation of our registered society from Haemophilia Federation India, New Delhi. Now in our HTC we are getting the supply of humanitarian product time to time through HFI recommendation from World Haemophilia Federation, Canada. Due to this today our district and other adjoining districts haemophilic patients are getting the benefit of this directly, now they and their family are feeling relieved.
Today the scenario has completely changed with the help of WHF and a new hope is clearly visible in our lives.
Haemophilia Society, Jind.
Affiliated to HFI New Delhi, India
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.
hola somos de argentina , padecemos deficiencia congenita de factor VII mi pequeña y yo , Rita y Martina somos … ella usa profilaxis dos veces por semana debido a sus sangrados espontaneos , presento hemartosis en su rodilla izquierda repetitivamente y diferentes sangrados desde que esta en profilaxis su vida mejoro bastante, adaptamos todo a sus necesidades, ahora esta mucho mejor y desde aca tratamos siempre de informarnos de todo lo nuevo que haya sobre nuestra patologia… ella tiene 15 años y esperamos algun dia pueda avanzar mas todo para la cura… tenes estudios geneticos que nos ayudan a entender mejor la patologia ya que tambien presenta una deficiencia en adhesion plaquetaria, nosotros como padres solemos estar presentes y concientizar a la poblacion de esta patologia que se da 1 en 500-000 personas, damos charlas en los colegios y en la actividades en las que puede participar martina, que por lo general las adaptamos… desde argentina mar del plata vamos a estar concientizando desde redes sociales en el dia mundial de la hemofilia… gracias y besos para toda la comunidad..
Soy portadora y madre de un niño con hemofilia a severa y autismo y albinismo a él cual de dieron un pronóstico de vida muy corto por ser venezolanos y con su múltiple patologías y por yo averlo dado a luz con 14 años y fuy madre soltera el hecho de que mi hijo naciera con todo esto me motivo a aprender mucho de las diferentes patologías y de como poder ser madre soltera, no miento fue muy dificil por que el se auto agresiva y no hablaba y no expresaba lo que sentía esto es duro para cualquier madre pero gracias a Dios y su amor infinito que me da fuerzas para luchar por mis hijos pude seguir Luchando y aprendiendo cada día mi hijo comenzó a caminar a los 16 meses y se caia mucho esto me llevó a crean un gorro protector de goma flex para que no se golpeara y a colocarle especie de parches de este mismo material en su ropa en la parte de las rodillas lo cual lo ayudó mucho a amortiguar las caídas ya hoy mi hijo tiene 13 años por la grave situación de nuestro país de origen tuvimos que migrar a Ecuador estuvo casi 2 años sin ningún tipo de tratamiento pero gracias a Dios ya logramos que por el sistema de salud público entrará. En profilaxis por el hospital pediatrico baca Ortiz con la hematólogo claudia ochoa que es de gran ayuda y orientación para todas las evaluaciones médicas que mi hijo ha necesitado ya que por el autimos no a tocado luchar muy fuerte contra el bullying en la escuela y la incomprensión de algunos docentes ante las condiciones que tiene mi hijo pero no por esto nos damos por vencidos seguimos luchando de la mano de Dios para poder superar todas las metas y seguir para ayudar a michos niños y madres que tengan la misma condición y que por poca o ninguna información no saben como manejarse esa es mi historia como madre adolescente de un niño con hemofilia a severa, autismo y albinismo que no para de soñar y se llama Rafael Agustin Montoya Jurgensen y es un genio tecnológico como el mismo lo dice
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.