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When she was first diagnosed with Sickle Cell disease, Deondra Clark was told she might not live past her 21st birthday. Now at the age of 26, she’s focused on being the best mother she can be and hoping to pursue a career in medicine.
By IU Health Senior Journalist T.J. Banes, email@example.com
It’s an inherited group of disorders where red blood cells form sickle shapes, die early and leave a shortage of red blood cells. When Sickle Cell crisis strikes, the blood flow is blocked resulting in unimaginable pain, infection and stroke.
Deondra Clark was experiencing that pain recently. Her stay at IU Health University Hospital was one of more than 20 since her birth. At 26, she is still beating the odds – she was told early in life that she might not live beyond her 21st birthday.
But she has hope. And she also has two young children – Zy’are Clark, 1, and Payton Wheat, 3 – who give her the will to live. One of four children Clark is the only one in her family who was diagnosed at birth with Sickle Cell.
As she nibbled at some mashed potatoes Clark recently joked with nurse Sarah Lee about their matching braces. Keeping her spirits up helps Clark focus on getting out of the hospital and back home with her children.
Born in Elkhart, Clark moved with her parents to Oakland, Calf. and returned to Indiana when she was in grade school. She spent her childhood on medication and had her first stroke at the age of 16 – severely affecting her memory.
She will never forget the pain – both physical and emotional.
“In school I couldn’t do much because of my disease. I missed out on sports, prom, and homecoming. Some things required being outside and my body doesn’t do well with cold. I couldn’t do swimming in school because if I jumped in the pool my body would go straight into crisis. It wasn’t a life like other kids,” said Clark, who is in the care of oncologist Dr. Rakesh Mehta.
She recently earned her diploma through the Excel Center and a certification as a business professional. She’s also working toward training as a certified nursing assistant and has her hopes set toward a career as a physician working with children diagnosed with Sickle Cell.
“I won’t stop until I see ‘Dr. Deondra Averielle Clark’ on my diploma,” she said.
She says she has a couple of people to thank for their encouragement. Through the Excel Center she met Tiffany Jewell who facilitated a senior seminar.
“She helped me through so much like times like this when I’m in the hospital she’d say ‘you’ve got this’ and ‘keep going, don’t give up.’ It took me awhile in school but when I finally walked across that stage she cried, I cried,” said Clark, who works part-time as a senior caregiver.
Through the Indiana Hemophilia and Thrombosis Center Clark attended a support group where she met Dr. Simone Eastman Uwan. Born in Guyana South America, Uwan grew up with her young sister and mother until she was 13, and immigrated to the United States in 1984. She became a doctor focusing on caring for the underserved. Last year, Uwan released the book “A Doctor in a Patient’s Body: Dreaming Big with Sickle Cell Disease and Chronic Pain.” The book addresses her life with a diagnosis of Sickle Cell disease.
The disease affects millions of people throughout the world. Last month, doctors reported the first evidence that genetically edited cells could offer a safe way to treat Sickle Cell disease. Reports indicate the gene-editing technique called CRISPR have started working, inside the body of the first sickle cell patient to receive the experimental treatment.
According to the National Institutes of Health in the United States most people who have Sickle Cell disease are of African ancestry. About one in 13 African American babies are born with the Sickle Cell trait and about one in every 365 is born with the disease.