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Sunday, April 20, 2014

Speak Out, Create Change!


Kenyatta National Hospital
It’s about time. Time to speak out and speak up about hemophilia: our community, our accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working together to improve care.

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
“My prayer today,” Dr. Kibet invoked,  “is that we walk forward as a group, so we can advance the issues that affect us. We are one body with different endowed parts. We want to be worthy partners for better hemophilia care 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.

Anastasia, lab technician
Other take aways from Dr. Kibet:

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
Kibet thanked the WFH and Project SHARE for their support of donated factor. He also thanked donors in US, especially those who support Eldoret project, like the Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

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.

Emmanuel
This is a huge point. Kenya is large, and roads can be difficult. Most patients living in rural villages have no way to get to the treatment center in Nairobi, the capital, or can afford transportation. I know first-hand as I have traversed these roads quite a few times. Imagine taking a public bus, crowded, hot, hours long, with a painful psoas bleed or worse.

James Kago
The audience really responded to this idea and asked about home therapy… hoping that someday, someday speaking out… will create change.

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
Asante sana everyone!!

Mrs. Mwangi and Stephen






Moline Odwar and Laurie Kelley





Maureen Miruka of JMHS
john with Laurie Kelley


Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon

Peter, Maureen Miruka, Jovan Odwar

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