10:06pm Tuesday 31 March 2020

Innovative outreach program educates community about sickle cell disease; is national model for such efforts

A marquee outreach program developed at St. Jude Children’s Research Hospital is a national model for raising awareness about the largest genetic disorder in the world.

The Know Your Sickle Status program, or K.Y.S.S., provides free educational programs and screenings to families affected by sickle cell trait and sickle cell disease. K.Y.S.S. increases awareness among at-risk populations in the general public and among teenagers and young adults.

Based in Memphis, Tenn., St. Jude has partnered with African-American and Latino-based community organizations since 2008 to provide more than 3,000 sickle cell trait screenings in the area. Approximately three million people in the U.S. have sickle cell trait. Thousands more are unaware of their trait status.

“If one parent has sickle cell trait and the other parent has sickle cell trait or any other abnormal hemoglobin trait, the couple has a one in four chance of having a child with sickle cell disease. That’s why it is important for people to know their status,” said Yvonne Carroll, R.N., director of Patient Services in the St. Jude Department of Hematology. “A simple blood test is all it takes.”

Sickle cell disease is a group of genetic disorders involving red blood cells. Although anyone can inherit the disease, approximately one in 12 African Americans has sickle cell trait. Sickle cell disease is also prevalent among those of Caribbean, Latin American, Mediterranean or Middle Eastern descent.

“Most people with sickle cell trait live normal lives without any symptoms or medical complications,” Carroll said. “But, there are cases in which they can experience life-threatening complications under certain conditions such as extreme heat, dehydration, extreme stress and lack of oxygen.”

The peer education component of K.Y.S.S. targets African-American teenagers and young adults at risk for having children with sickle cell disease. St. Jude teams with a network of public schools, the NAACP Youth Council, and faith-based and community groups in the Memphis area to provide sickle cell education and training to teenagers using the K.Y.S.S. curriculum. To date, more than 300 K.Y.S.S. peer educators have spread the word about sickle cell disease among their peers. The program received national recognition by the NAACP, thanks to the efforts of peer educator Jasmine Bowden. She coordinated awareness presentations to more than 200 of her peers.

St. Jude has one of the largest sickle cell centers in the country. Approximately 800 patients, from infants to teenagers, are treated at the center. St. Jude also helps those with sickle cell disease across the country through its research discoveries. A recent study, for example, found that an inexpensive drug commonly used in adults with sickle cell is also effective in very young children. The drug had not historically been used for this population. Five St. Jude research laboratories are dedicated to the study of sickle cell disease, making it also one of the largest sickle cell research programs in the country.

“St. Jude has been involved in significant breakthroughs involving sickle cell disease since the hospital opened in 1962,” said Winfred Wang, M.D., a member of the St. Jude Department of Hematology. “The education and outreach components of our sickle cell program will become increasingly important as we continue to develop novel therapies to prevent disease complications and investigate gene therapy techniques to treat sickle cell disease.”

To access sickle cell resources and materials at St. Jude, visit www.stjude.org/sicklecell.

St. Jude Children’s Research Hospital
St. Jude Children’s Research Hospital is internationally recognized for its pioneering research and treatment of children with cancer and other life-threatening diseases. The hospital’s research has helped push overall survival rates for childhood cancer from less than 20 percent when the institution opened to almost 80 percent today. It is the first and only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children, and no family ever pays St. Jude for care.

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