Sickle cell patients suffer as disparities in care and research persist | oneSCDvoice
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Sickle cell patients suffer as disparities in care and research persist


 

When 9-year-old Jeremy Brown is in pain, it feels like he is being stabbed, while the pain experienced by Deborah Oliver, 40, is like a hundred simultaneous charley horses.

Brown, of Bridgeport, and Oliver, of New Haven, have sickle cell disease (SCD), a genetic blood disorder that causes excruciating pain, life-threatening complications and a shortened life expectancy. Almost one-half of sickle cell patients die in their 40s.

The disease affects some 100,000 Americans, about one in 365 African Americans and one out of 16,300 Hispanics; and in lesser numbers, people with Middle Eastern, Indian, Caribbean and Mediterranean ancestries. An estimated 2,000 people in Connecticut have SCD.

But the disease—discovered over 100 years ago—receives little research, funding and attention.

 

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