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Tuesday, June 18, 2024

Black Hoosiers not staying silent about sickle cell disease

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Giving blood is one way to help those with sickle cell disease. This inherited blood disorder causes the red blood cells to change shape and form a crescent or sickle.

Sickle cells become stiff and can block blood flow, preventing organs from receiving needed oxygen. This can cause severe pain and organ damage. The life expectancy for patients with sickle cell disease is generally 20 years shorter than the average life expectancy.

1,695 Hoosiers have sickle cell disease. Black or African American Hoosiers make up 87% of people with the disease in Indiana, according to the Indiana Sickle Cell Data Collection Program.

RELATED: The reality, research and future medicine for sickle cell disease

Hoosiers with sickle cell disease

“I was diagnosed in 1989 when I was four years old. I was not diagnosed at birth like most babies are today because I was born just a few years shy of a statewide newborn screening in Illinois since I’m from Chicago,” said Lena Harvey, a self-described sickle cell warrior.

“Most times, I will share how sickle cell works, and my struggles, and how the Martin Center helps with this.”

The Martin Center Sickle Cell Initiative in Indianapolis works with the Indiana State Department of Health to educate doctors and new mothers about the sickle cell trait.

Babies identified with abnormal hemoglobin by the department’s newborn screening are provided with follow-up services.

The Martin Center provides many other services including education and advocacy, support groups, transportation, a food pantry and even Gatorade. All services are important in meeting the needs of those with sickle cell disease.

“Growing up as a young girl with sickle cell disease in a colder climate like Chicago was definitely difficult for me. I can remember the energy that it took just as a child,” said Harvey.

Sekou Dolley, 12, is a youth ambassador for the Martin Center Sickle Cell Initiative in Indianapolis.

He said the disease has meant he cannot go outside on cold days or stay in the pool for too long. He has suffered from a pain crisis where the sickle cells get stuck in the bloodstream.

Raising awareness

“I had an episode last January, and it was my first episode. Hopefully there are no more, but it felt sort of like I had a knife thing struck through my arm. It hurt a lot,” said Dolley.

“One night, the pain was too much, so my mom came from her night shift and took me to the hospital. My mom told me about being a youth ambassador with the Martin Center, so I wanted to apply and interview to help the community that has helped me for many years.”

The Martin Center offers children, like Sekou, adults and even newborns help and support in their fight against sickle cell disease.

Harvey and Dolley both live in Indianapolis where Marion and Lake County have the highest incidence of sickle cell disease in the state; one in every 556 babies born into the Black population have sickle cell disease.

Harvey visits the Statehouse alongside other advocates for sickle cell disease Monday, Feb. 12, to encourage lawmakers to consider the needs of Hoosiers living with sickle cell disease, who often experience disparities in health care.  

Advocating for people with sickle cell

The sickle cell team from the Indiana Hemophilia & Thrombosis Center along with many Indiana partners will represent the more than 1,600 Hoosiers who have sickle cell disease.
It is estimated that even more Hoosiers carry the sickle cell trait and could pass this life-threatening disease on to their children. 

“There are people all across the state that are suffering in silence, and all we have to do is get blood donations to go up 1% to serve everybody struggling with the disease,” said Harvey.

Contact staff writer Jade Jackson at (317) 762-7853 or by email JadeJ@IndyRecorder.com. Follow her on Twitter @IAMJADEJACKSON. 

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