St. Jude patient Bailey
Sickle Cell Awareness Month
Join St. Jude in September as we honor children with sickle cell disease, as well as focus on research and treatment for this genetic blood disorder.
What is sickle cell disease?
Sickle cell disease (SCD) is an inherited blood disorder that affects a person’s red blood cells.
What does sickle cell disease do?
Normal red blood cells contain hemoglobin A, which carries oxygen from the lungs to all parts of the body. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, which causes the red blood cells to change from the round shape to a banana or “sickle” shape. Some complications from sickle cell disease include:
• stroke
• organ damage
• pain
• infections
• painful swelling of hands and feet
• fatigue
St. Jude sickle cell disease patient Bailey lives an active life. Read her story.
More than 500,000 babies are born with sickle cell disease worldwide each year.
St. Jude has been dedicated to finding a cure for SCD since before the hospital first opened its doors. In fact, our first research grant was for the study of SCD. St. Jude is currently in the middle of a bold plan for saving the lives of children around the globe — extending clinical research for sickle cell disease beyond symptom management to finding cures.
Sickle cell disease affects about 100,000 people in the U.S. It occurs in about 1 out of every 365 Black or African American births. It occurs in about 1 out of every 16,300 Hispanic American births.
St. Jude has one of the largest pediatric SCD treatment programs in the country. Children with SCD are treated in this program from birth through age 18. Once patients turn 18, the St. Jude-Methodist-Regional One Sickle Cell Disease Transition Clinic helps them move to adult care. The clinic works to reduce long-term disease complications and deaths from SCD. The transition clinic has continued to grow and now includes participation from the Diggs-Kraus Sickle Adult Cell Center.
About 1 in 13 Black or African American babies in the U.S. is born with the sickle cell trait.
Sickle cell trait is (SCT) a change (mutation) in a gene that affects the hemoglobin in red blood cells. The trait does not usually cause health problems, but people with SCT can pass the genes for sickle cell disease on to their children. A blood test can determine if you have sickle cell trait.
St. Jude is a leader in developing groundbreaking clinical trials for blood disorders and other serious childhood diseases.
St. Jude patient Courtney with her mother in 2022
St. Jude has long been a leader in treatment for pediatric sickle cell disease patients, but what happens when pediatric patients age into adult care?
St. Jude patient Franser
Gene editing brings new era of hope for cure to sickle cell disease for kids like Franser
“The ultimate goal is that it could lead to cures with no risk and no side effects, which is perfect medicine, but that’s hard to attain right now,” said Weiss, MD, PhD, chair of the St. Jude Department of Hematology.
Former St. Jude patient Kimberlin
First to be cured of sickle cell disease, Kimberlin relishes the joy of each day
In 1983, when she was 8 years old, something remarkable happened to Kimberlin. A bone marrow transplant, which doctors at St. Jude had intended to treat her acute myeloid leukemia, cured not only the cancer, but her sickle cell disease as well.
St. Jude patient Elani with her mother
With individualized care at St. Jude, Elani is ready for the world
Elani won’t let sickle cell disease dictate her choices. She intends to study and travel in the U.S. and Europe. Elani has become a passionate advocate for sickle cell disease awareness and St. Jude. “I love St. Jude so much,” Elani said. “St. Jude gives you so much hope.”
Akshay Sharma, MBBS, MSc, St. Jude Department of Bone Marrow Transplantation and Cellular Therapy with patient Corey
Gene therapy improves blood flow in the brain for SCD patients
Scientists at St. Jude found that patients with sickle cell disease that received gene therapy experienced a return to normal blood flow in the brain.
An illustration of sickle-shaped blood cells, which indicate sickle cell disease.
Hydroxyurea may help kids with sickle cell disease breathe better
Hydroxyurea, the most common treatment for sickle cell disease, appears to decrease sleep-disordered breathing.
St. Jude helped Courtney, pictured in 2022, transition into adult care for sickle cell disease.
Shortening the gap between pediatric and adult care
Research at St. Jude shows that outcomes of sickle cell disease patients worsened the longer the gap between pediatric and adult care.
Jerlym Porter, PhD, MPH, St. Jude Department of Psychology and Biobehavioral Sciences
Evaluating care for ‘the forgotten population’
Researchers at St. Jude focus on the next frontier of research and care for those with sickle cell disease and what it could look like if social determinants were considered a variable of disease.
Unlike other hospitals, the majority of funding for St. Jude comes from generous donors. Your support ensures that familes never receive a bill from St. Jude for treatment, travel, housing or food.
And St. Jude cares for some of the world’s sickest children regardless of their race, ethnicity, beliefs or ability to pay. Our patients receive the customized care they need to treat childhood cancer and other life-threatening diseases — like sickle cell — no matter what barriers they may face.
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A platelet count test
Your $14 gift could help provide one platelet count test for a St. Jude patient.*
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Patient meals
Your $50 gift could provide two days of meals to a patient.*
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Medical teaching dolls
Your $75 gift could help provide medical teaching dolls for St. Jude patients. Child Life Specialists use dolls and real medical equipment to teach patients about procedures to make them less intimidating.*
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Sickle cell transition packet
Your $100 gift could help provide one sickle cell transition packet to a teen patient who is transitioning to adult care.
*When you make a donation using this information, your donation will be used to provide breakthrough research, treatment and cures. Items listed here are representative of services and supplies that are part of the treatment and care of children at St. Jude. The cost of each item or service is an approximation, and will vary based on actual costs incurred and individual patient needs. Your donation will be used for the general operating needs of St. Jude, where no family ever receives a bill for treatment, travel, housing or food.
Sickle Cell Awareness Month FAQs
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Sickle Cell Awareness Month is a time to honor patients with sickle cell disease and to focus on research and treatment for this genetic blood disorder.
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National Sickle Cell Awareness Awareness Month is in September.
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Burgundy or dark red is the color that signifies sickle cell awareness.
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Burgundy or dark red is the color that signifies sickle cell awareness.
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World Sickle Cell Day is every June 19.
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September is the awareness month for several kinds of cancer in addition to Sickle Cell Awareness Month. Other cancer observance months held in September include:
- Childhood Cancer Awareness Month
- Leukemia and Lymphoma Awareness Month
- Ovarian Cancer Awareness Month
- Prostate Cancer Awareness Month
- Thyroid Cancer Awareness Month
- Uterine Cancer Awareness Month
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