Today’s Faces of Sickle Cell Disease

Honoring Today's Faces of Sickle Cell Disease. The future of sickle cell disease research is now. Learn about the people behind the progress.

September is Sickle Cell Awareness Month. Throughout the month, the NHLBI will share real stories of strength and perseverance. The stories will highlight people living with sickle cell disease, their loved ones, clinicians, and the researchers whose work offers hope for a cure. Read their stories below.

Patrick Onwuemene: Clinical trial volunteer, sickle cell disease survivor
Clinical trial volunteer, sickle cell disease survivor His story: Patrick Onwuemene, age 46, was born in Lagos, Nigeria, and immigrated to the United States...
Tesha Samuels: Gene therapy recipient, founder of nonprofit group
Gene therapy recipient, founder of nonprofit group Her story: It has been almost six years since Tesha Samuels, 41, first described her sickle cell journey for...
Anissa Sacchino
Living Warrior Her story: Anissa Sacchino, a 49-year-old from Temple Hills, Maryland, learned early that most childhood activities — like playing in the snow or...
Ebow H-Smith
Health care professional, sickle cell disease advocate His story: Ebow H-Smith has turned his experience with sickle cell disease into an opportunity to connect...
Ugonna Anyadike
Credit: Justice Gray
Health enthusiast, hip-hop artist His story: When Ugonna Anyadike, a 29-year-old Baltimore, Maryland resident, grew up, he lived a normal life. This included...
caesar scant playing a violin.
Violin prodigy, sickle cell disease survivor His story: On August 1 Caesar Sant celebrated his 14th birthday, surrounded by his mom, dad, two sisters, and a few...
headshot of chris sweet.
Computer specialist, father, sickle cell advocate His story: Chris Sweet, 47, refuses to let sickle cell disease (SCD) stop him from living a full life. When he...
Kwanzaa Bennett
Writer and musician, gene therapy trial participant Her story: On Feb. 8, 2022, Kwanzaa Bennett, a writer and musician based in Dallas, celebrated the first day...
headshot of yaw lokko
Patient advocate, clinical research trial participant His story: Yaw Lokko, a 59-year-old from Burtonsville, Maryland, has lived with sickle cell disease all...
Juliana Voss
Nurse, clinical research trial participant Her story: When Juliana Voss, R.N., M.S.N., was a child, she dreamed of being a nurse. But as she grew up, her sickle...
Shauna Whisenton and her son Dorian appear in a photo together.
Manager, Community Engagement, American Society of Hematology Research Collaborative Her story: When Shauna Whisenton, 42, received a bone marrow transplant (...
photo of Umut Gurkan, Ph.D.
Sickle cell researcher, technology developer, and professor at Case Western Reserve University His story: Umut Gurkan, Ph.D., a biomedical engineering professor...