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Parent and Caregiver Handbook for Sickle Cell

Appendix: Sickle cell d​isease greats

Below are a sample of people who live with, or who have lived with (or advocated for), sickle cell disease and have achieved great things.

Medical

Dr. Kwaku Ohene-Frempong

Ohene-Frempong was a pediatric hematologist-oncologist and an expert in sickle cell disease, originally from Ghana. His life was changed when he had a son with sickle cell disease, and he began dedicating his life to working with SCD early in his career. He pioneered the testing for and treatment of sickle cell disease around the world and developed the first public health program for screening newborns in Ghana, Africa. He was an excellent athlete in track-and-field, competing for Yale University as well as for Ghana at the 1970 British Commonwealth Games. He was involved in public health initiatives at the Tulane University School of Medicine in New Orleans, Louisiana, and later the Children's Hospital of Philadelphia (CHOP) in Pennsylvania. He later became a full-time physician in Ghana after retiring from CHOP.

Entertainment

Miles Davis

Legendary trumpeter, bandleader, composer, and 12-time Grammy winner Miles Davis lived with sickle cell disease. He was one of the most influential and celebrated figures in the history of jazz music. He struggled with health issues – arthritis, hip-joint problems and pneumonia – but wasn't diagnosed with sickle cell disease until middle age. The lack of treatments available to him affected his work. He stopped playing music for five years in the 1970s to cope with his health issues but was able to return to his music, continuing until he died in 1991.

Dexter Darden

Movie and television actor (Joyful Noise, Maze Runner) Dexter Darden was diagnosed at birth with sickle cell disease. His acting talent was discovered by Hollywood legend Paul Newman at acting camp. Darden serves as an ambassador for SCDAA and shares his challenges and accomplishments with the sickle cell community through his work with the organization.

Larenz Tate

Larenz Tate was born in Chicago, the youngest of three brothers who are actors like him. Tate is best known for his roles as O-Dog in Menace II Society and as Councilman Rashad Tate in Power. Tate's other films include Dead Presidents, Love Jones, A Man Apart, Crash, Waist Deep, and Ray. He is a national spokesman for sickle cell disease awareness.

Albert 'Prodigy' Johnson

The rapper known as Prodigy was diagnosed with SS disease, a form of sickle cell disease, at the age of 3. As a member of the rap group, Mobb Deep, he was able to express his anger about suffering from the disease along with other personal topics. He teamed up with the Sickle Cell Disease Association of America (SCDAA) as a panelist at their 2011 conference and as a partner in their “No Pain" campaign, which helped create national awareness of sickle cell disease and to raise funds. Prodigy wrote an autobiography about his life, including his struggles with sickle cell disease, called, My Infamous Life: The Autobiography of Mobb Deep's Prodigy. He passed away from complications of sickle cell disease in 2017 at the age of 42.

Tianne 'T-Boz' Watkins

Grammy award winner and reality star T-Boz rose to fame as a member of the musical group TLC and as the star of Totally T-Boz. She now performs as a solo artist. She has been a spokesperson for SCDAA and has spoken publicly about how sickle cell disease affected her childhood and continues to have an impact on her life.

Paul Williams

Rock and Roll Hall of Fame artist Paul Williams was a founding member of the epic vocal group, The Temptations. He lived with sickle cell disease and its challenges while touring nationally and internationally and developing the signature choreographic routines that helped make The Temptations the unique and famous Motown group they became. He passed away in 1973.

Georgeanna Tillman

As a founding member of Motown super group, The Marvelettes, Georgeanna Tillman and the group rose to fame with hits such as, “Please Mr. Postman." She was married to a member of the Motown band The Contours., She was diagnosed as a child with sickle cell disease and also lived with the chronic disease lupus.

Sports

Tiki Barber

Professional football player (New York Giants), television personality (Sunday Night Football, The Today Show), and children's book author, Tiki Barber lives with sickle cell disease. He and his twin brother Ronde are advocates for those with the disease and promote awareness of the problem of iron overload as a result of transfusions.

Billy Garrett Jr.

Despite being told in high school that he should not play due to his sickle cell disease, Billy Garrett Jr. went on to play at DePaul University with the support of his family and in 2019 was the first player signed to the National Basketball Association (NBA) known to have the disease. He played with the New York Knicks and Phoenix Suns before moving to international leagues.

Santonio Holmes

The Super Bowl champ Santonio Holmes lives with sickle cell disease. He is credited with making one of the greatest Super Bowl catches of all time, in a touchdown that helped the Pittsburgh Steelers defeat the Arizona Cardinals and left him MVP. Tackling sickle cell led him to create the Third and Long Foundation to raise awareness and provide financial support and treatment options for families affected by the disease.

Public figures and every day heros who live with or work on sickle cell 

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