Nov 26, 2024
Empowering teens with hemophilia in Kenya INDIANAPOLIS (WISH) — A team of blood disorder experts from Indianapolis achieved a significant milestone by hosting a medical education camp in Kenya. This initiative targets men aged 13 to 21 with hemophilia, providing essential skills for independent living while fostering a strong sense of community. Dr. Anne Griest, co-founder and co-medical director at Innovative Hematology in Indianapolis, said, “Hemophilia is an inherited bleeding disorder where individuals are born with a lack of a complete deficiency of one of the proteins that are needed for normal blood clotting. So this can lead to a bleeding tendency.” Griest said hemophilia affects approximately 1 in 5,000 males. Women may have milder symptoms or can be carriers due to a mutation on the X chromosome, which is why it mainly impacts males. The medical doctor said, “The most typical symptoms are pain and swelling of the joint, and you don’t see any blood on the outside. So, initially, it could look like a bad sprain, but there’s an accumulation of blood on the joint responsible for the symptoms.” Innovative Hematology has organized an annual camp for children with hemophilia in Indiana. The business recently partnered with a clinic at a teaching hospital in Eldoret, Kenya, which offers a similar program to those in need. Griest said, “If it can be done here, it can be done there. The goals were to bring the teens together and help them realize they are not alone and that others are affected by this disorder, to help them learn more about the condition and symptoms and how to participate in their self-treatment and have fun.” The camp’s programming reflects initiatives including Indiana’s Camp Brave Eagle, serving children with bleeding disorders. The Shujaa Pride Camp, meaning “brave champion” in Swahili, creates a safe and inclusive environment. “They learn to put a needle in their vein and then self-administer the clotting factor. None of the teens in Kenya had had experience with doing this. So, we got them around a table and showed them how to do it.” The camp has garnered enthusiastic support from the local Kenyan community. Innovative Hematology plans to expand the Shujaa Pride Camp to provide more access to hemophilia support. “The importance of being able to provide care, not just for individuals in Indiana, but also recognizing that in less-resourced settings, there are people of all ages with this disorder as well. We are trying to reach out and support another program elsewhere.” Shujaa Pride Camp in Eldoret, Kenya. (Provided Photo/Innovative Hematology) Shujaa Pride Camp in Eldoret, Kenya. (Provided Photo/Innovative Hematology)
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