Tanisha Belton, a health researcher at Children's Hospital of Philadelphia, talks about sickle cell disease and her ongoing research project.
Tanisha Belton, senior manager of research initiatives at PolicyLab at Children's Hospital of Philadelphia, with her twin sisters, Ashli and Asya . The twins were diagnosed with sickle cell disease as newborns.Sickle cell disease, a genetic blood disorder, affects about 100,000 Americans. Millions more carry the gene, which can get passed down through generations, and may not know it.
As they got older, we needed to let CHOP know if we were traveling, so they could tell us where the nearest hospital with a sickle cell center was and bring medical documentation with us to present to the hospital if something happened. As I got older, I thought, `How can I learn more to ultimately support them?’
They’ll be 26 next month, both working young ladies, living a fairly healthy life. I think sometimes they forget that they’ve been living with the disease because they have been blessed and they haven’t had many hospital stays or a need for being on transfusions on a regular basis.It’s to help youth living with sickle cell — teaching them to manage their disease on their own, instead of parents making your appointments and managing medications.
It’s bringing so much attention to the field of sickle cell. Historically, there isn’t much funding in this space, so to see that the time has been taken to conduct clinical trials to figure out if there was a way to edit genes to potentially cure folks with sickle cell is just amazing.Being in this space has shown me that you never know what someone is facing. You could work with someone who has sickle cell who shows up every day, and you don’t even know it.
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