The World Federation of Hemophilia (WFH) is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders.
thank you to everyone involved in helping and donating for the recovery of my nephew, the same thing was experienced by his uncle Azril (his mother's younger brother) before but we did not know about the disease and only received treatment at the usual clinic in our village. his tenacity to get well is just like his uncle's spirit. Until the last time we saw his uncle recovering and being able to carry out normal activities after he was a teenager and died due to a road accident. I hope this lasts until he is completely cured and can also be obtained by all patients in the world. Thanks a lot
Excelente. La dedicacion de la directiva de la Fundación Apoyo al Hemofílico (FAHEM) y el excelente y continuo trabajo de lideres, como Haydee Benoit y toda la directiva, y el excelente Programa de Ayuda de la FMH han hecho posible ese gran cambio para las PCH.
So happy to see this video. By the way, I am a 25 yo with Haemophilia B. I live in the city close to Bandung which is around 2hours road trip from my city Cianjur. I have been doing the treatment almost routine since I was 7/8 years old. But, unfortunately, the treatment is still not available in my city so I have to go to the nearest hospital that provides the treatment which is actually fine but also sad when I got a very serious bleeding case, I and my family are struggling to get the treatment. It is because of the range. Just like my latest bleeding case around 3 months ago, at that time I have to do a round-trip for a month every 5 days just to get the treatment once. I did not get the treatment at my dose because of the limitation on my government health insurance. It is not only just me but also almost every patient who passes the limit will never get the treatment based on the dose should be. So during the treatment of my previous bleeding case, I think it kinda hinders the healing process because of the un maximalize treatment due to the limitation.
My son 9years old learn to self infusion since 2 month ago😊☺. And according to his doctor he is the youngest heamophilian in my country who can self infusion and i am so proud with him.
That is awesome!! I learned how to self infuse at 5! i’m 25 now, so for 20 years i’ve done it myself, every day/ every other day! I’ve gone to camps, education weekends, family camps, and i’ve taught/helped teach kids ages 5-10 to self infuse! I absolutely love doing that! It’s very important to learn young, and to feel comfortable and confident at a young age in doing it! While I definitely know younger kids than your boy that can self infuse, it doesn’t take away from his milestone, and the importance of him learning! It’s a huge step in being able to care for himself, and in learning how to have hemophilia and being able to live, not living and just putting up with with your hemophilia!
Hello Patrick...keep on struggling to help them.. May, God always gives you and family by the health and strength.... Greeting from TULUNGAGUNG, EAST JAVA, INDONESIA. WE DO LOVE YOU....
