|Kenyatta National Hospital|
As World Hemophilia Day was celebrated in many countries, I chose to spend this year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I founded, Save One Life, has three programs here—microgrants, scholarships and sponsorships—each touching directly the lives of many children and young men with hemophilia.
The day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family members—parents and children with hemophilia or von Willebrand disease. The day provided an overview of hemophilia for the press members present, the needs of Kenya, and words of wisdom for moving forward from this day.
|Dr. Kibet lectures about hemophilia in Kenya|
One main goal is to ensure better diagnosis, he added. With a population of 43 million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400 patients were identified at one point (meaning they came in at one time in their lives for treatment), but the numbers are not reliable. Only about 50 patients are regular visitors to the treatment center.
We Kenyans we have every right to be provided for by things that affect us with hemophilia.
We must take charge of our own destiny.
Togetherness will make us strong.
Speak with one voice!
We must lobby the government to support testing and availability of factor.
|Speak out... for kids like Emmanuel|
He also thanked the Jose Memorial Haemophilia Society and showed a photo of a man who was in bed for four days with a severe bleed. The JMHS provided him with a donation of factor.
He noted that there is simply not enough factor; once Kenya secures enough regularly, then it can offer home therapy.
Kenya has come a long way, and I was very excited to see at this meeting more change is afoot, all for the best, to create the kind of unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch served outside on the hospital grounds. I was able to hang out with a few of the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby now!), Emmanuel, John. With all these friendly faces, it was like coming home.
|Lucy Kago asks a question|