Sickle Cell Awareness Month: One man says living with the disease is not a death sentence
BATON ROUGE, La. (BRPROUD) — Alvin Henry was diagnosed with sickle cell anemia at the age of 2 after appointments with doctors and testing.
“My mother noticed my behavior changing when I was about 2. She couldn’t calm me, so she ended up taking me to multiple doctors,” Henry said.
An African-American doctor suggested that he get tested for sickle cell.
From that moment forward, everything changed with his health.
The Louisiana Department of Health data shows about 80 infants are born with the blood disorder each year in Louisiana. The disease changes how red blood cells are shaped, which can cause major problems in the body — like stroke, blindness, organ damage and pregnancy complications.
“It kinda turns that red circle shape into like a sickle shape,” Henry explains. “It loses its oxygen and nutrients, and it’s kinda long and sticky.”
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That can be very painful. According to Mayo Clinic, there are treatments to relieve pain and prevent complications. Data shows newer treatments could cure the disease.
“When I was young, there was kind of no treatment,” Henry said. “If you had this pain, you just took pain meds or you ended up going to the ER or hospital. Now they’re several different therapies, several different companies.”
He mentioned how some treatments are more expensive than others. It didn’t kill his hope.
“Keep pushing, keep fighting, attitude that you have to have. That the, kinda the only way you can get through a disorder like this,” Henry said.
He is the Board President of the Sickle Cell Association of South Louisiana.
“We advocate for those who are living with sickle cell. Go out there and educate the community,” Henry said.
Every year, the nonprofit works across the state to spread awareness about the disease. This month, they will hold a statewide symposium in Lafayette from 7:30 a.m. until 5 p.m. Sept. 19.
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