Sickle Cell Disease and Black Women: A Tale of Two Sisters

Sickle cell disease is one of the many health conditions that disproportionately affect Black women. In fact, one out of every 365 Black children born in the United States will have a genetic form of sickle cell, which causes red blood cells to become sickle-shaped. These deformed blood cells can block small vessels, causing severe pain. While sickle cell affects Black people more than other ethnicities, there has been little research on how to treat it effectively. This has led to many Black people with sickle cell dying from preventable complications.

By the end of 1995, the cumulative mortality rate for Black children with sickle cell in California and Illinois was 1.5 per 100. Sickle cell is also the most common cause of pediatric stroke. A child with sickle cell has a stroke risk 333 times greater than a healthy child without the disease.

A simple test could have protected 16 and 17-year-old Kyra and Kami Crawford, who suffered from strokes. At 12 years old, Kyra experienced her second stroke, which could have been avoided if she had received an annual screening test and treatment proven to prevent 9 out of 10 pediatric strokes. When the sisters finally got the health care they needed, a scan of Kami’s brain revealed signs of a silent stroke. The girls' have since been getting blood transfusions every three weeks to reduce their stroke risk.

If only Kyra and Kim had received the necessary testing and treatment from the start, they might have never had the strokes, to begin with. Hospitals must do better and make an effort to inform parents of the tests and treatments available to help their children who are living with the devastating effects of sickle cell.

How has SCD affected you?

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