September is National Sickle Cell Awareness Month. In the United States, there are about 100,000 individuals living with sickle cell disease and millions more worldwide. Our team of sickle cell experts at Cincinnati Children’s treats nearly 300 children with sickle cell disease, providing care from birth until transition to adult care.
During this important awareness month, we hope you will learn more about this condition and the people in your community that it affects. Here are four important things you should know about sickle cell disease.
4 Facts About Sickle Cell Disease
1. Sickle cell disease is a genetic condition.
Sickle cell disease is the most common severe genetic blood disorder in the United States. The most common form—sickle cell anemia—occurs when a child inherits an abnormal sickle gene from both biological parents who have sickle cell trait.
All babies born in the United States are screened at birth for sickle cell disease. It is the number 1 disorder identified on national newborn screening programs. Cincinnati Children’s provides follow-up testing and education for any baby born in the southwestern Ohio region that may have sickle cell disease or sickle cell trait.
2. Sickle cell disease is a disorder of the red blood cells.
Sickle cell disease is a lifelong, chronic illness that can cause red blood cells to become sticky and crescent-moon shaped. These cells then clog blood and hinder oxygen flow throughout the body.
Blocking blood and oxygen flow can cause extreme pain, stroke, organ damage and many other life-threatening complications. People who have the disease have frequent hospitalizations.
3. Sickle cell disease can affect people of any race.
Sickle cell disease most commonly occurs in African-American families, with about 1 in 365 babies being born with sickle cell disease. But persons of any race and background may be affected, including people whose ancestors are from South and Central America, Saudi Arabia, India, the Mediterranean and sub-Saharan Africa.
4. Sickle cell disease can be treated.
While there is not a yet a universal cure, people with sickle cell disease benefit from taking a daily medication called hydroxyurea. The medication alleviates anemia, reduces pain and serious complications, and helps sickle cell patients live longer. Doctors at Cincinnati Children’s have shown that starting hydroxyurea early in life provides the best protection against medical complications.
Some patients also receive blood transfusions. Others with a tissue match may choose to have a stem cell transplant.
Recently, gene therapy has been approved by the FDA for sickle cell disease and may provide another treatment option for older patients. It is important that people with sickle cell disease see a hematologist throughout their lives to manage their care effectively.
Quality of life for people who have sickle cell disease has improved significantly with recent research developments, especially early hydroxyurea treatment. We are hopeful that exciting discoveries in the coming years will hold additional options for patients.
Cincinnati Children’s has a rich history of our research discoveries leading to the development of new and improved treatment protocols for sickle cell disease. Together with our generous community, we find ways to fund our Hematology faculty as they pursue their transformative research ideas. If you’re interested in helping fund this important work, donate now.
