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Deondra Clark was unable to have many of the experiences that other children had. Homecoming, prom, sports, and other childhood activities were not a possibility for her, as she was diagnosed with sickle cell disease at birth. Frequent pain crisis stopped her from enjoying the things that the other children were able to. Now she is 26, a mother of two, and working to become a physician. Her goal is to work with children who have been diagnosed with sickle cell disease.
About Sickle Cell Disease
Sickle cell disease is an umbrella term that includes a group of disorders, one of which is sickle cell anemia. This disease is characterized by deformed red blood cells that are shaped like a sickle. The misshapen cells get caught along the walls of blood vessels and create blockages, which restrict blood flow.
The protein hemoglobin, which carries oxygen throughout the body, is responsible for this disorder. A mutation in the gene that produces hemoglobin causes the red blood cells to deform. Sickle cell disease is passed down in a recessive pattern, meaning that a child must inherit the mutated gene from both parents. This condition is much more common in people of African and Hispanic descent.
Symptoms of sickle cell disease include pain crisis, swelling of the hands and feet, jaundice, delayed growth, and fatigue. Adults tend to feel these symptoms at all times, whereas children will only feel the affects during pain crisis. Regardless of age, damage can occur to the organs that face the restricted blood flow. Commonly affected organs are the spleen, liver, kidneys, brain, skin, eyes, joints, bones, heart, and lungs.
Currently the only cure for this disease is a bone marrow and blood transplant. But because many people are not eligible for this procedure, it is not a complete cure. Other forms of treatment are symptomatic and meant to prolong life.
Deondra was diagnosed with sickle cell disease at birth, and she was the only child out of her four siblings to have the disease. At a young age she was told that she may not live past 21, but she is now 26 and has defied the expectations of doctors. Deondra has been in and out of the hospital since her diagnosis. She was prescribed medication for the disease and took it throughout her childhood. Despite the treatment, she had her first stroke at 16. Unfortunately, her disease made her miss out on a lot of childhood experiences like prom and sports. Despite these experiences, she defied doctors. She is now a mother of two and is working towards becoming a certified nursing assistant. One day she wants to be a doctor who works with children with sickle cell disease. She has said that she “won’t stop until I see ‘Dr. Deondra Averielle Clark’ on (her) diploma.”
Read Deondra’s full story here.