Malika Abrams, a young woman with sickle cell anemia and avascular necrosis (AVN), talks about her work in rare disease advocacy.
Sickle cell anemia is an inherited blood disorder. Early symptoms usually occur in childhood and include swelling, fatigue, and jaundice. As the disease progresses, there is an increased risk of infections, delayed growth, and periodic episodes of pain (sickle attacks). Over time, organ damage can occur, creating problems in the spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones, and/or skin.
AVN is a serious and progressive condition that causes the death of bone tissue stemming from a lack of blood supply to the area. AVN is usually caused by a sudden injury—such as a broken bone or a dislocated joint — or sustained damage to the tissue that develops over time. It occurs when there is a lack of blood supply to bone tissue, causing it to become necrotic. When the bones of a joint are affected, such as in the case of the ankle, the cartilage can deteriorate, causing arthritis and pain.
Ms. Abrams explains that her work in rare disease advocacy began when she started using her YouTube channel as an outlet for educating others about AVN and then sickle cell anemia as well. Additionally, she is the president of the Differently-Abled Student Association at Medgar Evers College where they regularly provide education for students and faculty about conditions like sickle cell anemia and AVN.
To learn more about sickle cell and other rare hematologic conditions, visit checkrare.com/diseases/hematologic-disorders/