Inherited bleeding disorders are conditions that require medical intervention to ensure that the patient can enjoy a good quality of life. These disorders are all rare, but some are rarer than others, and thus harder to diagnose. In Afghanistan, the WFH Humanitarian Aid Program recently helped a boy who had an extremely rare bleeding disorder: factor XIII deficiency.
Muhammad Eisa is an 8-year-old boy who lives in the province of Herat, Afghanistan. After suffering a serious bleed, he was referred to the hemophilia treatment centre (HTC) in Kabul, a city over ten hours away from his home. There, he was seen and underwent diagnostic tests under the care of Enayatullah Hashemi, MD, Director of the National Blood Bank in Afghanistan. The Kabul HTC is equipped to test for hemophilia A and B, but patients who might have rarer forms of bleeding disorders—such as factor XIII deficiency or von Willebrand disease (VWD)—are sent to other countries for diagnosis.
Because Eisa’s testing was inconclusive at the Kabul HTC, he was sent to India where he was diagnosed with factor XIII deficiency, and given his first factor treatment. The injected factor stopped his bleeding enough that he was able to return to Kabul. The fresh frozen plasma (FFP) that he was given improved his condition, but he still wasn’t receiving the optimal treatment for factor XIII deficiency.
Hashemi then reached out to the WFH for support. The WFH Humanitarian Aid Program sent six vials of factor XIII to Afghanistan to treat Eisa, enough for six months of prophylactic treatment. This factor controlled the boy’s bleeds, and allowed him to require injections at relatively long intervals of 25 days—a significant benefit in a country where travel can be long and challenging. This donated factor has had a major impact on the quality of life of the young Afghani boy, and has also given his parents peace of mind.
About the WFH Humanitarian Aid Program
The WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. None of this would be possible without the generous support of Sanofi Genzyme and Sobi, our Founding Visionary Contributors; Bayer, our Visionary Contributor; Grifols and Roche, our Leadership Contributors; and our Contributor, CSL Behring. To learn more about the WFH Humanitarian Aid Program, visit www.treatmentforall.org.