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The SCD Community: We Are the World

On Friday, September 10, I attended the Annual Conference of the Sickle Cell Disease Coalition virtually. As I listened to the presenters, especially those focused on sickle cell as a global health crisis, a big takeaway for me was the scope of the challenges faced by SCD patients and their families in resource-poor countries.


In sub-Saharan Africa, 3% of all babies born have SCD, although many of their parents, probably a majority, have no idea of this fact because there is no state provided newborn screening to test for the disease. Out of these infants, between 50% to 90% will not live to see their fifth birthday, and 90% will not reach adulthood.


One provider in our group told the poignant story of when she was a resident physician, still honing her skills. A mother came running up to her with an infant yelling, “Please help my baby!” The physician took the baby, and just that quickly, the baby died from SCD in her arms.


The SCDC is doing important work with global partners to bring newborn screenings and treatments like hydroxyurea to these resource-poor countries. Check out their website http://www.scdcoalition.org to learn more about their efforts and how you can help.

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