Image of Sickle Cell St. Jude patient Za'Mya and her mom

St. Jude sickle cell patient Za'Mya and her mom

 

World Sickle Cell Day

For more than 60 years, St. Jude has been committed to understanding and treating sickle cell disease (SCD). Learn more about SCD and how you can help raise awareness and support St. Jude in our ongoing research. 

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What is World Sickle Cell Day? 

World Sickle Cell Day is an annual day of recognition to raise international awareness around SCD and the challenges patients and families face when confronting this illness. At St. Jude, sickle cell is more than a disease that gets the spotlight for one day — it is a continuous effort to save children around the world. 

When is World Sickle Cell Day? 

World Sickle Cell Day, sometimes referred to as World Sickle Cell Awareness Day, is June 19. 

 
Patient Za'Mya sits in a hospital room as someone takes her temperature with a thermometer.

St. Jude patient Za'Mya
 
 

What is sickle cell disease? 

Sickle cell disease is a group of blood disorders that prevent the normal flow of blood in the body because of the effect on the hemoglobin within red blood cells.

  • Hemoglobin is the main ingredient in red blood cells, helping them carry oxygen from the lungs to other parts of the body. 
  • Normal red blood cells have hemoglobin A, which helps keep red blood cells soft and round so they flow easily through small blood vessels.
  • People with SCD have mostly hemoglobin S (also called sickle hemoglobin) in their red blood cells. 
    • Hemoglobin S can form hard fibers inside the red cells, causing them to reshape into a sickle (banana) shape. Abnormally shaped red blood cells cannot move through blood vessels easily and, at times, are blocked from delivering oxygen to some body tissues.
  • SCD is always inherited (passed down in families). 
    • When one parent has sickle cell disease and the other carries only one of the abnormal genes, such as hemoglobin S, their child has a 1 in 2 (50%) chance of having SCD. 
    • When both parents carry a sickle cell gene but are not sick themselves, their child has a 25% (1 in 4) chance of having SCD.
 
 
St. Jude sickle cell patient Za'Mya with her mom.
 

I want her to do everything and more – despite sickle cell.

Sickle cell patient Za'Mya's mom, Nytasha

 

Meet Za’Mya and her mom

Currently thriving, Za’Mya has been a patient at St. Jude since shortly after birth, when a newborn screening revealed she had sickle cell disease.

Read Za'Mya's Story

 
 
Abstract art by St. Jude patient Mariah.

Facts about sickle cell disease

     

  • Is the most common inherited blood disorder in the U.S., affecting about 100,000 Americans
  • Can cause pain, infections, fevers, fatigue, strokes and organ damage, and can lower life expectancy by 20-30 years
  • Impacts 1 out of every 13 Black people in the U.S. through the sickle cell trait, with a chance of having a child with the disease if both parents carry the trait
  • Affects about 1 out of 365 African-American babies born in the U.S.
  • Is most common in African-Americans and Hispanics, but can occur in any group
 
 

Sickle cell disease research at St. Jude

The first research grant that St. Jude ever received, in 1958, before the hospital was even built, was for the study of SCD. St. Jude subsequently launched the first comprehensive study of SCD and its impact on the Black population.

St. Jude has been part of major advances in sickle cell disease treatment over the last 60 years and continues to explore new cutting-edge curative therapies for the disease.

 
 

Learn more about our sickle cell research

 
Patient Franzer stands outdoors wearing a smile and a school backpack.

Finding a cure for sickle cell disease

Scientific milestones mark the progress made by St. Jude toward finding a cure for sickle cell disease.

See Our Timeline

 
 
 
Dr. Rudolph Jackson holds a slide in a historical photo of him in a St. Jude lab.

Making history 

When St. Jude opened in 1962, Danny Thomas vowed the hospital would treat patients regardless of race, religion or ability to pay. In 1968, Dr. Rudolph Jackson became one of the first Black doctors at St. Jude.

Learn About Dr. Rudolph Jackson

 
 
 
Maurice Walton Tate and her twin sister, Bernice Freeman, stand in white nursing outfits in a historical photo.

Forging a path

Driven by the tragic loss of her daughter who was born with SCD, Maurice Walton Tate was a nurse who served in many sickle cell units and helped forge a path for others. 

Learn About Maurice Walton Tate

 
 
 
 
St. Jude sickle cell patient Courtney hugged by her mom.

Photo taken in 2020.

 

I tell people I thank God, and I thank St. Jude second-most for, really, all aspects of Courtney's life.

Sickle cell patient Courtney's mom, Audrey

 

Meet Courtney and her mom

Courtney was diagnosed in utero with SCD. When Courtney was 2 months old, doctors at St. Jude Children’s Research Hospital started her on drug treatment. Since then, Courtney has enrolled as an Ivy League student and is managing her health well. 

Read Courtney's Story

 
 
Abstract art by St. Jude patient Mariah.

Sickle cell disease research progress at St. Jude 

Thanks to generous donors like you, St. Jude has made the following advances:

 
 

Dr. Vernon Rayford shares thoughts on SCD research at St. Jude

Dr. Vernon Rayford is an internal medicine and pediatric specialist located in Tupelo, Mississippi. Dr. Rayford is a dedicated supporter of St. Jude and our work researching and treating diseases like SCD that disproportionately affect children of Black and Hispanic descent.

 
 
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Patient Za'Mya stands with a smile and wears colorful St. Jude T-shirt.

St. Jude patient Za'Mya
 

Help us find a cure for sickle cell patients

Unlike other hospitals, the majority of funding for St. Jude comes from generous donors. 

Because of your support, we can provide children cutting-edge treatments not covered by insurance, at no cost to families.

Donate Now Read More Sickle Cell Stories

 
 

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St. Jude patient Za'Mya smiling wearing a St. Jude tee.

At four years old, Za’Mya loved to cuddle and play with her dolls. But she’s also always been a bit of a tomboy and gives her older brother, Ja’Darius, a run for his money. “We call her the boss,” says mom, Nytasha. “But she’s also a sweetheart.”

St. Jude patient Za'Mya withe her mom in a hospital room.

Za’Mya has been a patient at St. Jude Children’s Research Hospital since shortly after birth, when a newborn screening revealed she had sickle cell disease, an inherited blood disorder affecting red blood cells that can cause anemia, pain, organ damage and even death.

“In healthy people, blood cells are like donuts, they’re round,” explained Nytasha. “But when you have sickle cell disease, the cells are like crescent moons, and they can cause pain crises and other problems.”

St. Jude patient Za'Mya smiling while reciving a hug and a kiss from her mom.

At St. Jude, Za’Mya’s treatment includes hydroxyurea and twice daily penicillin. “Sickle cell disease affects the whole body,” said Nytasha. “St. Jude provides us with a lot of information so we can help Za’Mya learn how to manage it as she gets older.”

Nytasha is already teaching Za’Mya the importance of staying hydrated and remembering to take her medicine. “Even though she’s young, she knows every night before bed, it’s time for her medicine,” Nytasha said.

St. Jude patient Za'Mya hugging her mom.

When Za’Mya started pre-K, something Nytasha was nervous about, but she knows it’s important for Za’Mya to have the same experiences Ja’Darius, who does not have sickle cell disease, has had. “I don’t want sickle cell to be what weighs Za’Mya down,” Nytasha said. “She has to be a little more cautious, but I want her to do everything and more — despite sickle cell.”

St. Jude Sickle Cell patient Courtney.

Images taken in 2020.

Courtney was diagnosed in utero with sickle cell disease, a blood disorder that comes with a host of complications, including chronic, sometimes debilitating pain. When Courtney was 2 months old, doctors at St. Jude Children’s Research Hospital started her on drug treatment.

St. Jude patient Courtney smiling within her mother's arms.

After two decades of monitoring and therapies at St. Jude, she enrolled at an Ivy League university, living on her own far from home and managing her health.

St. Jude wasn’t just a healing place for Courtney. It’s where she learned to read, in a difficult summer between first and second grade, as she struggled with the painful side effects of her disease. It’s also where Courtney “bloomed,” said her mom. “I tell people I thank God, and I thank St. Jude second-most for, really, all aspects of her life.”

St. Jude patient Courtney smiling while looking back at her mother giving her a hug.

St. Jude has a deep and longstanding commitment to children with sickle cell disease. Scientists at the hospital have been researching sickle cell disease since the institution opened in 1962.

Today, with early diagnosis and use of recently developed treatments, the life expectancy of children with sickle cell disease has increased 98 percent. However, there is much work still to be done.

Courtney is thriving and enjoys singing, acting and public speaking.

St. Jude patient Courtney smiling with a wooded and grassy green background.

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