My name is Mosongoh, a Kenyan man aged 43 yrs. I have hemophilia. I was diagnosed when I was 3 years old, and ever since then, it’s been a constant presence in my life. Hemophilia is a genetic disorder that affects the blood’s ability to clot properly, which means that even a small cut can be dangerous. In Africa, this condition puts a person affected with hemophilia in very dangerous situations, due to cultural beliefs. Growing up, I had to be really frustrated most of the time the community did not seem to understand why I  had to bleed profusely with a small cut, and in school, it was not any better.

My mother made sure I didn’t do anything too risky while my father did what to have anything to do with me, she had to take me to the hospital every few weeks to be transfused with blood and this made to be known as a village blood drinker, I was not allowed to play with other kids in our neighborhood as I was referred as a breeder one by the parents of my friends in the village.

Despite all the precautions, I still had some close calls.  My joints started to have internal bleeds. One time, when I was playing with my little sister, I accidentally fell down and started bleeding heavily on my forehead. My parents had to rush me to the hospital, where I got surgery and a transfusion of blood.

As I got older, I started to feel really frustrated with my condition. I couldn’t do the things my friends were doing, like playing sports, having girlfriends, or attending village parties. I also had to be really careful about what I ate and drank since certain foods and alcohol could interfere with my clotting.

But over time, things have improved since the World Federation of Hemophilia started to donate factors products. I have learned to adapt and cope with this condition and I have found other things I’m good at, like playing chess.  I have started to realize that having hemophilia had given me a unique perspective on life. I know that every day is a gift, and I have learned to appreciate the little things.

Now, as an adult, with my dear wife Daphine my daughters, Laurie and little Anne I’m grateful for the life I have. I know that hemophilia will always be a part of me and my family, but I also know that it doesn’t define us. I’m more than my condition, and I’m proud of who I am.

For now, our government has not given any commitment to provide medication for persons with hemophilia. Hopelessly have no space in my heart. The future of hemophilia is bright.