Four Important Things to Know About Sickle Cell Disease

Four Things To Know About Sickle Cell Disease

Burgundy ribbon awareness for sickle cell awareness.

September is National Sickle Cell Awareness Month. In the United States, there are approximately 100,000 individuals living with sickle cell disease and millions of people worldwide. Our team of sickle cell experts treats nearly 300 children – providing care from birth until transition to adult care. During this awareness month, we hope you will read on to learn more about this condition and the people it affects:

  • Sickle cell disease is a genetic condition.

Sickle cell disease is the most common genetic blood disorder in the United States. The most common form occurs when a child inherits the abnormal sickle gene from both biological parents who have sickle cell trait. All babies born in the United States are screened at birth, and Cincinnati Children’s provides follow-up testing and education for any baby born in southwestern Ohio that may have sickle cell disease or sickle cell trait.

  • Sickle cell disease can affect people of any race.

Sickle cell disease most commonly occurs in African-American families, with approximately 1 in 365 babies being born with sickle cell disease. However, it is also present in people whose ancestors are from South and Central America, Saudi Arabia, India, the Mediterranean and sub-Saharan African.

  • 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, which clogs blood and hinders oxygen flow throughout the body. When the blood and oxygen flow is blocked, it can cause extreme pain, stroke, organ damage, and many other life-threatening complications. This can lead to frequent hospitalizations for people who have the disease.

  • 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 patients live longer lives. Some patients also receive blood transfusions, while others with a tissue match may choose to have a stem cell transplant. New research studies are testing gene therapy in adults with sickle cell disease in hopes that it will provide another treatment option for patients. It is important that people with this disease see a hematologist throughout their lives to manage their care.

Quality of life for people who have sickle cell disease has improved significantly with recent treatment developments and we are hopeful that discoveries in the coming years will hold additional options for patients.

To learn more about the Comprehensive Sickle Cell Center at Cincinnati Children’s and their world-renowned clinical care and research, find contact and referral information or call 513-636-2371 .

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Lisa Shook, MA, MCHES

About the Author: Lisa Shook, MA, MCHES

Lisa is Administrative Director of the Comprehensive Sickle Cell Center and Assistant Professor in the Cancer and Blood Diseases Institute at Cincinnati Children’s. She is part of a team of hematologists, nurse practitioners, care managers, social workers, psychologists, school intervention coordinators, newborn screening coordinator and clinical research professionals. Lisa has devoted her career to improving patient and provider education, and outcomes for children with sickle cell disease.

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