September Shines a Light on Sickle Cell Disease and the Strength of Those Affected

Each September, National Sickle Cell Awareness Month brings greater attention to sickle cell disease and the individuals, families, healthcare professionals, and advocates confronting it every day. The observance creates an important opportunity to replace misunderstanding with education while honoring the courage and resilience of people living with this lifelong condition.

Sickle cell disease is an inherited blood disorder affecting hemoglobin, the protein responsible for carrying oxygen throughout the body. The condition can cause red blood cells to become rigid and sickle-shaped, restricting blood flow and potentially producing severe pain crises, infections, organ damage, strokes, and other serious complications. It affects approximately 100,000 people in the United States and more than 20 million worldwide, according to the National Heart, Lung, and Blood Institute.

Although sickle cell disease can affect people of many backgrounds, its impact is especially significant within Black communities.

Approximately one in every 365 Black babies in the United States is born with the disease. Awareness is essential because patients’ pain is not always visible, yet it can be sudden, intense, and medically serious. Listening to patients, responding compassionately, and ensuring timely access to qualified healthcare can make a meaningful difference.

Scientific progress continues to offer hope. Treatment may include medication, blood transfusions, blood and bone-marrow transplantation, and gene therapies. In December 2023, the FDA approved two gene therapies for sickle cell disease, marking an important advancement for eligible patients. Treatment decisions should always be made with a qualified healthcare team based on each individual’s health and circumstances.

National Sickle Cell Awareness Month is a call to learn, advocate, donate blood when eligible, support affected families, and amplify the experiences of those living with the disease. Awareness must extend beyond September: every conversation can help challenge stigma, encourage earlier care, and move communities toward a future in which every person with sickle cell disease is seen, heard, supported, and treated with dignity.