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1,700 Hoosiers living with deadly disease to meet at statehouse

INDIANAPOLIS (WISH) — Hoosiers from across the state will encourage lawmakers to consider the needs of people living with sickle cell disease.

Monday is Sickle Cell Advocacy Day.

Sickle cell disease is a group of inherited red blood cell disorders. In someone who has the disease, the hemoglobin in their blood is abnormal, which causes the red blood cells to become hard and sticky and shaped like a sickle.

Dr. Brandon Hardesty, a hematologist at Indiana Hematology and Thrombosis Center, says it’s hereditary, painful, and ultimately kills anyone who has it.

“The primary symptom of Sickle Cell Disease is pain,” Hardesty said. “The pain can occur anywhere. It is a deep pain from poor blood flow to muscles or bones.”

He says 1,700 Hoosiers live with the disease, including 36-year-old Lena Harvey.

“Sickle Cell no longer has to be a death sentence,” Harvey explained. “I have sickle cell sickle beta thalassemia plus.”

Sickle beta thalassemia is an inherited form of sickle cell disease that “affects hemoglobin, the protein in red blood cells that carries oxygen to different parts of the body,” according to the National Institute of Health.

Harvey was diagnosed with the disease at 4 years old.

“Just two years ago, I was approaching 36, and I thought, ‘Wow. This can’t really be all that it is.’ I wake up every day in pain and I never know when I’m going to have to go to the emergency room,” Harvey said.

Hardesty said 87% of sickle cell patients are Black and 52% percent are female. The CDC says the disease occurs among about 1 out of every 365 Black or African-American births.

The goal Monday is to raise awareness and request funding for bills that will support sickle cell care.

“Most individuals with sickle cell disease will live into their 50s or 60s, which is still a shortened life span that we would like to extend,” Hardesty said.

Harvey added, “I don’t want any warrior, any person struggling with this illness, to feel like they’re alone because they’re not. You’re not alone. There is hope. There is hope. It’s coming.”

Monday’s event starts at 11 a.m. at the statehouse.