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أم عمار
عندما شُخِّص ابني على أنه مريض هيموفيليا لم أكن أعرف شيئا عن هذا المرض ، كان وما زال الحالة الوحيدة في العائلة ، عايشت المرض وصارت لديّ خبرة فيه ، عانى صغيري كأي طفل مريض ، ولكن نفسيته والحمد لله كانت جيدة . هذا الطفل الصغير كان يحب الأطفال ويحب الناس ، كذلك كان يحب […]
Shirley Matos Miguel
Sou mãe de um pequeno guerreiro, o Felipe tem 3 anos. Possui Hemofilia A grave. Meu filho é um verdadeiro milagre em nossas vidas. No início de 2017, quando tinha apenas 11 anos, foi diagnosticado com Hemofilia num momento muito delicado, estava com meningite bacteriana, pois havia batido a cabeça e estava com pequenos vasos […]
Vignon chimene
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 […]
Andrei
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 […]
Chedia AROUA
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 […]
Dimitra
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 […]
Esraa Hussein
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 […]
Denielle Foster
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 […]
kleey alexander dugarte campos
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 […]
بهروزی نکو هما
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 […]