Malika Abrams was eight years old when her parents told her that she had sickle cell disease (SCD) after she experienced her first pain crisis during a family outing to a local pool. This crisis was the beginning of countless hospital stays and life-threatening complications related to the disease. Now 30 years old, Malika is sharing her story in an effort to increase awareness of this rare and often-misunderstood genetic disorder.
SCD causes the red blood cells to form in a sickle shape. As a result, patients can experience anemia, severe pain crises, infections, strokes, heart disease, pulmonary hypertension, kidney failure, liver disease and other potentially life-threatening complications. While there are therapies currently available to treat some of the disease’s symptoms, there are no approved treatments that target the genetic cause of SCD.
Over the last 22 years, Malika has experienced multiple complications as a result of SCD. She has been hospitalized for acute chest syndrome, a type of pneumonia that is one of the most common causes of death in sickle cell patients, multiple pain crises each year, and avascular necrosis, a condition that causes bone tissue to die due to insufficient blood supply. She underwent two hip replacement procedures by the time she was 22 years old. She has grown to recognize the extreme importance of understanding SCD—something she did not realize growing up.
Malika’s struggles to cope with the physical and emotional effects of SCD have led her to take many steps to help others learn about the disease to build support for better care and research. When she returned to college to earn her bachelor’s degree in biology she became the president of the school’s Differently-Abled Students Administration. In this role she hosted SCD awareness events with other cabinet members and spoke to students and faculty about the disease. Today she regularly shares her story on social media and she also has a YouTube channel where she shared the experience of undergoing hip replacement. She is planning to attend school to become a physician assistant so that she can get involved in patient care. Her mission is to share her story so that others do not feel alone in their struggles.
Here is an original interview by New York Beacon’s Yasin Muhammad.
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