World Sickle Cell Awareness Day: Understanding Sickle Cell Disease with Dr. Denton

Every year on June 19, the world observes World Sickle Cell Awareness Day — a day designated by the United Nations to raise public awareness about sickle cell disease, one of the world's most common and serious genetic blood disorders. At the Congolese United Foundation, we are committed to health education within our community, and this year we mark the occasion by releasing two important educational videos featuring a thoughtful conversation with Dr. Denton.

What Is Sickle Cell Disease?

Sickle cell disease (SCD) is a hereditary blood disorder in which the body produces abnormally shaped red blood cells. Instead of being round and flexible — allowing them to move easily through blood vessels — these cells become rigid and crescent (sickle) shaped. This abnormal shape causes them to get stuck in small blood vessels, blocking blood flow and oxygen to parts of the body.

People living with sickle cell disease can experience a wide range of symptoms including episodes of intense pain (called sickle cell crises), anemia, swelling in the hands and feet, frequent infections, delayed growth, and vision problems. In severe cases, the disease can also lead to stroke, organ damage, and other life-threatening complications.

Sickle Cell Disease and the Congolese Community

Sickle cell disease disproportionately affects people of African descent — including the Democratic Republic of Congo, which has one of the highest rates of sickle cell disease in the world. The DRC accounts for a significant share of global sickle cell births. For Congolese families living in the United States, understanding this disease, knowing one's carrier status, and accessing appropriate care are critically important steps toward better health outcomes.

Sickle cell disease is inherited when a child receives two copies of the sickle cell gene — one from each parent. If both parents carry the sickle cell trait (one copy of the gene), each pregnancy carries a 25% chance that the child will have sickle cell disease, a 50% chance of inheriting the trait, and a 25% chance of having no sickle cell gene at all. Genetic counseling and early testing are therefore essential tools for family planning and early intervention.

Treatment and Living with Sickle Cell Disease

While there is currently no universal cure for sickle cell disease, significant advances in treatment have improved the quality of life and life expectancy for those living with the condition. Treatments include hydroxyurea (a medication that reduces the frequency of painful crises), regular blood transfusions, pain management strategies, antibiotics to prevent infections, and in some cases, bone marrow or stem cell transplants, which can offer a potential cure for eligible patients. Newborn screening programs are critical for early diagnosis and timely treatment.

Watch Our Educational Videos

To help raise awareness and provide accessible health education, the Congolese United Foundation has produced two videos in partnership with Dr. Denton. In these conversations, Dr. Denton explains what sickle cell disease is, how it affects the body, what symptoms to watch for, and what steps individuals and families can take to protect their health. The videos are available in English and French to reach as many community members as possible.

English version: Understanding Sickle Cell Disease | A Conversation with Dr. Denton — watch on YouTube

French version: Comprendre la Drépanocytose | Une Conversation avec le Dr. Denton — regarder sur YouTube

We encourage every member of our community — especially parents, caregivers, and young people — to watch these videos, share them with family and friends, and talk to a healthcare provider about sickle cell testing. Together, we can reduce the burden of this disease in our community through education, awareness, and access to care. If you have questions or need help connecting with health resources, do not hesitate to reach out to the Congolese United Foundation.