TAMPA, Fla. — Sickle cell anemia is a blood disease that affects millions of people around the world and Florida has one of the highest concentrations of sickle cell patients in the country.
GREG’S STORY LIVING WITH SICKLE CELL ANEMIA
“I was diagnosed with sickle cell at the age of one years old,” said Greg Thomas. Thomas said living with the blood disease has affected him tremendously. “Childhood wasn’t normal. I had to limit my activities. I couldn’t play sports and I would always want to do what other boys did. I wanted to play basketball, and I couldn’t really do that because I was a sick child,” said Thomas.
Staying hydrated is essential for people living with the disease. “Half a gallon. I’m almost there,” said Thomas as he chugged down water. The disease can be unbearably painful for the estimated 100,000 people in the U.S. living with it. “Sometimes, it’s a sharp pain or, like, excruciating pain,” Thomas explained. Thomas told me the pain gets so bad he often has to go to the hospital, which is why it’s important he stays on top of his medication. “This is what I take for the sickle cell, hydroxyurea, folic acid, and oxycodone for pain,” said Thomas.
UNDERSTANDING SICKLE CELL DISEASE
I wanted to learn more about this blood disease and how common it is. So, I went to Dr. Jawan Ayer’s office in Tampa. Her facility specializes in treating patients living with sickle cell. “Sickle cell disease is a genetic disease. That means that you don’t acquire it. You don’t catch it from somebody,” said Dr. Ayer.
Dr. Ayer told me that red blood cells, which carry oxygen throughout the body, look different in people living with the disease. Instead of them being circular, they’re shaped like a sickle, which negatively affects the body’s organs.
“The sickle cell gene is actually protective against malaria. So, in countries such as Africa and Mediterranean countries, sickle cell was a genetic mutation that was protective and so it survived in those countries and as a result, you’ll see sickle cell disease in people who are of African descent, but also you’ll see it in a lot of Hispanic patients,” said Dr. Ayer.
Dr. Ayer said there are currently two cures for the disease. One involves a bone marrow transplant, and the newest one involves a stem cell transplant. Both procedures can be complicated and don’t work with everyone.
NEW BILL TO FUND RESEARCH AND EXPAND TREATMENT OPTIONS
In Tallahassee, new legislation passed both the state house and senate that would fund $10 million yearly for research and expanding treatment options for sickle cell disease. However, Governor Ron DeSantis still needs to sign the bill before it becomes law.
“It’s the largest investment in sickle cell research I think in the country right now and certainly a giant step forward in the state of Florida,” said State Representative Kelly Skidmore who co-sponsored the bill along with Fentrice Driskell. “The other aspect of the bill allows adults who have been diagnosed with sickle cell to opt into the registry that we created that requires newborns to be put on the registry. This gives us a broader database from which we can pull specific research to help, again, get our arms around this disease in terms of treatment and potential a cure.”
Click here to learn more about sickle cell anemia and treatment options https://www.nhlbi.nih.gov/health/sickle-cell-disease/treatment
