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Prioritizing Sickle Cell Patients: A Chance to Mend Broken Ties

I’ve lived with sickle cell disease for 34 years now. Never have I imagined that a cure would be imminent, at least not within my lifetime. In fact, I remember days as an adolescent when my pediatric hematologist would tell me I’d be lucky to live long enough to experience college. It’s an everyday struggle living with an illness that penetrates all areas of my body where blood flows. Unlike most children who live with sickle cell disease (SCD), my daily struggle didn’t include constant visits to the emergency room plagued by excruciating pain (although I’d experience a great deal of pain in adulthood). Instead, the pain came from my monthly blood transfusions, which became a routine therapy after a stroke, that ultimately devastated my veins.

Not long after came the nightly subcutaneously-administered iron chelation therapy overnight infusions. This nightly treatment led my teachers to question whether I was being abused at home (which by the way wasn’t the case at all- I come from a loving household, thank you) due to the common occurrence of bruising and occasional swelling on my arms & legs.