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Sickle Cell Awareness Month

For 60 years and counting, St. Jude has been committed to understanding and treating sickle cell disease.

 
 
St. Jude patient Za'Mya with her mom.

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

 
 
 
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St. Jude sickle cell patients Kaitlyn and Khirsten in 2018

 

What is Sickle Cell Awareness Month?

In September, we recognize Sickle Cell Awareness Month, which is meant to raise international awareness of sickle cell disease and the challenges patients and families face when confronting the disease. 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.

 
 

Today, 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 12 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 all races
 
 
St. Jude sickle cell patient Za'Mya with her mom.
 

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

Nytasha, sickle cell patient Za'Mya's mom

 

The first research grant that St. Jude ever received, in 1958, before the hospital was even built, was for the study of sickle cell diseaseSt. Jude subsequently launched the first comprehensive study of sickle cell disease and its impact on the African-American population.

 
 

In more ways than one, St. Jude was a pioneer

Beyond cancer treatment, our focus on sickle cell disease is at the heart of our lifesaving mission: Finding cures. Saving children.®

 
 
 

Thanks to generous donors like you, St. Jude:

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

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

Audrey, sickle cell patient Courtney's mom

 

The research institution at St. Jude has been part of almost every major advancement in sickle cell disease treatment to date. Advances made over the past 20 years have raised the life expectancy for a sickle cell patient from mid-20s to mid-40s.

 
 

Other ways you can help during Sickle Cell Awareness Month

 
 
St. Jude sickle cell patient Elechi.

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Help raise awareness for sickle cell disease and how St. Jude is working to find a cure.

 
St. Jude sickle cell patient Jameson with his mom.

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St. Jude patient Za'Mya standing on a red platform with her arms raised.

Four-year-old Za’Mya loves to cuddle and play with her dolls, but she’s also a bit of a tomboy and gives her older brother, Ja’Darius, a run for his money. “We call her the boss,” says the kids’ mom, Nytasha. “But she’s also a sweetheart.”

St. Jude patient Za'Mya hugging 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 laughing 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.

Recently, 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.

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.

Now, after two decades of monitoring and therapies at St. Jude, she's a student 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 at college and enjoys singing, acting and public speaking.

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