Sickle cell disease may not be a hot topic of discussion in health and medical circles, but it still affects many African-Americans – and Dr. Dora Clayton-Jones intends to raise awareness and put a spotlight on patient care and advocacy as the new president of the International Association of Sickle Cell Nurses and Professional Associates.
“Some people think it’s cured,” said Clayton-Jones, an assistant professor and Arthur J. Schmitt Leadership Fellow at the Marquette University College of Nursing. “They are advancing science, but remedies like bone marrow transplants aren’t widely available. Gene therapy is still in development. So, we still have work to do in finding a cure and on the psychosocial level.”
Sickle cell disease affects about 100,000 Americans, overwhelmingly Black people, according to the Centers for Disease Control. The condition plagues one in every 365 Black babies born – with about one in 13 of those infants carrying the sickle cell trait – compared to one in every 16,300 Hispanic-American births.
It has affected the lives of numerous well-known individuals, from Paul Williams of The Temptations and Miles Davis to actor Larenz Tate, sportscaster Tiki Barber and entertainers Prodigy and Tionne “T-Boz” Watkins.
During Clayton-Jones’ term as president of IASCNPA, which began May 1 and concludes at the end of 2021, she plans to grow the membership and continue collaborating with organizations such as the Foundation for Sickle Cell Disease Research and the Sickle Cell Disease Association of America on programs that raise awareness and promote care support at local, national and international levels.
Along with annually providing academic scholarships to students with sickle cell disease, IASCNAPA provides a platform for medical professionals, social workers, sickle cell advocates and other health care professionals who provide care for people with sickle cell disease to improve their quality of care through education and standardized practice.
Chicago-born Clayton-Jones has a passion for advocating and caring for people with sickle cell that began with a childhood desire to help others. As a “candy striper” hospital volunteer in high school, she knew she wanted to work with children and youth in a helping profession.
