Bonjour je m’appelle chimene vignon je suis beninoise je suis conductrice d’hemophilie et mere d’un enfant hemophile, deficit en facteur VIII.
Quand j’ai appris que mon enfant avait cette maladie que je connaissait meme pas,et que le traitement n’existait pas dans mon pays. c’etait si le ciel s’effondrait sur ma tête. J’ai pleuré tous les larmes de mon corps.
Cette phathologie a changer toute ma vie, la soufrance et la fustration est notre quotien, mais aujourdhui grace au combat que je méne les hemophiles au benin ont une lueur d’espoir. Merci a AFATH et a la FMH
Je me rejouis de cette platforme.
Que Dieu benisse tous les personnes qui contribuent au bien etre des personnes soufrant des pathologies hemoraguiques rare.
Mme Vignon.

Today I’d like to share how I mentally dominated my haemophilia by the age of 14. I was in the 7th grade, my mom went to get groceries and I was about to go to school. I noticed my knee was getting progressively swollen and I needed treatment asap. I was all by myself at home, and I had nobody close by to help me inject. So, I sat down, took some deep breaths, prepared my factor, recalled what the nurses did when they injected me and just did it. It all went great and I was so happy. Time passed and I became way more independent, I was confident, my mom started to allow me to enjoy more of life, as I wasn’t in a constant danger anymore. A few years passed, I finished high-school and I decided that it’s time, at the age of 19, to go to uni to a different city. I now am a second year law student, working towards becoming a prosecutor. All of this would have not been possible if I didn’t have the courage to inject myself at that specific time.

I did learn to love hemophilia. Thank god.
I discover this disease two years ago with my son. Since that I discover also how to live for my children and then of course for my self. Because of hemophilia I had the chance to know such a wonderful people from all over the world. I had the chance to feel how much I m lucky to have a son with hemophilia.
We are able to change the quality of life of every hemophiliac patient for the best. Everyone from his side, from his country. All what we need is love, courage and confidence.

Hello. I am dimitra from Greece and i have haemofilia b with inhibitor.. i was first diagnosed when i was 17 years old, because none in my family has any bleeding disorder.. Until then i had problems when i was changing my teeths.. only… Although my factor 9 is 1,5%. 10 years ago , when the inhibitor came i had bruises everywhere… in every muscle that insists in my body.. also, when i gave birth to my son i also had bleedings… My son has haemofilia b with inhibitor lower than 1%… since he was 20 months… But his fainotype is good. He does bruises and muscle bleedings about 2 times / year… Except if he hurts… I am very happy being in this platform reading every experience from all over the world… It is very important for us ..

My family and I lived in Zarqa – Jordan. It was the first time we know about hemophilia after the birth of my first child. At the beginning of my child’s bleeding after circumcision I went to the nearest private hospital. After the tests, the doctor told us that he would prefer to go to a public hospital with the possibility of hemophilia.
At the Zarqa Governmental Hospital and after knowing the type of the missing factor ,he was given factor 9.
I ‘ve been told by the doctor that if you see any bruising or crying of the child for no reason, bring him directly to the hospital.
Two weeks later, my child was registered at the Hemophilia Center in Amman and we received enough information about the disease. The treatment plan has been developed by the center, If the factor is available, the patient can be given once a week.
I love Hemophilia ❤

I’m 37 and I have a 5 year old son with type B factor 9. He is also being evaluated for AD/HD. It has been a struggle with having to keep him calm down so he doesn’t hurt himself. It has happened quite often.It runs in my family my brother, 2 nephews all have type B along with Ad/hd. My two sisters and I are carriers. Our kids has the best hematologist Dr. Singleton at Tulane medical center and the greatest team.

hola soy darling campos soy portadora de hemofilia , y tengo un niño de 2 años que padece hemofilia tipo A MODERADA.ESTA PRESENTANDO UN CUADRO DE PROFILAXIS ALTA Y SE ESTA VIENDO MUY AFECTADO YA QUE EN VENEZUELA LAS COSAS NO ESTA FACIL Y NO TENEMOS TRATAMIENTO PARA QUE EL PUEDA CUMPLIR Y SALIR DE ESE CUADRO. SOLO ESTAMOS EN MANOS DE DIOS QUE MI HIJO SIGA LUCHANDO Y AUNQUE NO ES FACIL VER A TU HIJO QUE NO PUEDA DIVERTIRSE COMO TODOS LOS DEMAS NOS AFECTA PERO ES POR SU SALUD .,SOLO PEDIMOS AYUDA PARA ESTOS NIÑO DE DISTINTAS HEMMORRAGIAS Q TENGA SU TRATAMIENTO Y AL QUE NOS PUEDA AYUDAR DONANDO AL BANCO MUNICIPAL DE SANGRE DE VENEZUELA -CARACAS CENTRO NACIONAL DE HEMOFILIA.DIOS TODO LO PUEDE

من همابهروزی هستم 47ساله از تهران حدود 5ساله دچار بیماری ام اس دیابت لوپوس و هموفیلی شده ام اختلال در فکتود یک.سه.هفت.پنج.نه از فاکتور هفت استفاده می کنم خونریزهای،شدید از نقاط مختلف بدن من باعث شد چندین نوبت شیمی درمانی شده و خونم دچار مشکل شود
خواستم بدانید زندگی هنوز در جریانه و من هنوز زنده ام

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Iranian women and girls have menstrual bleeding in women eye for eye invitees About World Hemophilia Day to speak and tell of your problems

Bonjour.j ai un fils hemophilie B age10ans.marocaine je ai pas de moyen.pour aider mon fils je ai seulement mon dieu qui M aide.je ai peurunjour devient andicape

Hi My name is Fiona McDonnell I am a 51 year old mother of an 18 year old boy with Severe Haemophilia Classic A. I am also a carrier of the mutated gene. (as is my mother) Until the birth of my son I never had any real understanding of what Haemophilia was or how it impacted the lives of those affected. My son’s story now he is 18 is totally up to him to share. So I will focus on my health implications. My mother suffered very heavy periods (menorrhagia) and so when my periods where very heavy I just saw it as hereditary. As a business woman I often chaired meetings with my peers most of whom are male and spent very anxious times hoping I had not bled through during meetings despite multiple pads, super tampons and other precautions. Rinsing clothing out in Hotel bathrooms and Petrol Station washrooms was an embarrassing and distasteful operation, but functioning at work was a priority for me I simply had to do my best to not embarrass myself or others. A breakthrough came in the form of a casual conversation with a friend at Haemophilia Victoria’s annual Family (Community) Camp. It was the first year my husband had not attended and gave me the chance for some “private girl talk” I had never realised my menorrhagia could be related to the factor deficiency – sounds crazy, but my generation were told we couldn’t have “real symptoms” This wonderful Mother and her teenage daughter told me of using Tranexamic acid to alleviate this problem and that longer term an IUD could be a solution. My next visit to my GP had us discuss my options and what had been a really terrible time of the month became normalised and managed very easily. What I hope sharing my story does is help someone else to see themselves in my story and get the help they need to be more able to participate in life.

Mi historia no tiene que ver con sangrados, con lesiones físicas, ni con dar consejo alguno, mi historia es de una madre que luchó por tener un hijo sano, lo logro, logro que físicamente estuviera fuerte, pero tuvo un costo que a lo largo de los años se sentía venir, el costo de tanto recorrer hospitales, de convencer a los especialistas, de luchar por medicamentos, buscando la forma menos dañina de dejar fuera los sueños de un niño de pertenecer a las fuerzas armadas por ejemplo, limitando su vida a cambios constantes y llenando de inseguridades que se reflejan a la hora de evaluar un contenido en la sala de clases, pero como no ser inseguro si la tierna edad de la infancia, nadie le puede dar seguridad alguna que todo pasará sin complicaciones, cuando la vida siempre está en juego, cualquier motivo de juegos es visto como un descuido mortal, cualquier deporte entretenido en el cual eres el mejor es demasiado riesgo que correr, es la tierna infancia en la cual la seguridad que todo niño tiene para fortalecer los lazos afectivos, no puede con padres que están recién aprendiendo, escasean las destrezas sociales cuando no existe estabilidad y faltas mucho a clases, la esperanza que todo lo puede lograr si es con esfuerzo acá no vale, decirle a un niño que cree en héroes en superpoderes que no sueñe y se cuide cuando no estén sus padres para protegerlo que sea responsable, que sea consciente de síntomas y dolores.