On June 19, sickle cell patients, families, physicians and others joined forces to celebrate World Sickle Cell Day and raise awareness about sickle cell disease, an inherited red blood cell disorder that affects about 100,000 Americans and many more worldwide.
Held in the lobby of the Children’s Nutrition Research Center, the event featured an art project created by sickle cell patients from across the globe, music from a sickle cell patient involved in Purple Songs Can Fly, educational booths from various sickle cell-related organizations and comments from members of the Texas Children’s Sickle Cell Center.
View photos from the event below.
“Sickle cell disease is a condition that affects a large number of people worldwide,” said Dr. Donald Mahoney Jr., director of Texas Children’s Hematology Center. “It can affect every organ in the body and can cause serious complications if not treated.”
Texas Children’s has been at the forefront of the fight against sickle cell disease for decades, screening newborns for the disease since the 1950s. In 2001, Texas Children’s combined efforts and created Texas Children’s Sickle Cell Center, which offers comprehensive family-centered care for children with this complex blood disorder.
The program’s individualized course of treatment includes patient care, education, psychosocial support services, screening and counseling for children and their families. Serving more than 1,100 children each year, Texas Children’s Sickle Cell Center is one of the largest in Texas, offering the latest treatments including hydroxyurea, transfusions and stem cell transplantation.
“We are really fortunate here at Texas Children’s to be able to provide such dedicated care,” said Dr. Amber Yates, co-director of Texas Children’s Sickle Cell Center. “We have a large team and all we do is focus on children with sickle cell disease.”
The team also focuses on research and combatting sickle cell disease overseas in Africa where many more people suffer from the disease and screening and treatment are limited.
“We are one of the main centers of clinical research in sickle cell disease,” said Dr. Alex George, co-director of Texas Children’s Sickle Cell Center. “We have a strong research infrastructure and we have a well-organized clinical and research basis, which makes us an attractive research partner both for industry, pharmaceutical companies and for other institutions.”
Researchers collaborate with colleagues at other research institutions on different projects involving possible new medications for patients with sickle cell disease. Such research, George said, is key to treating and curing these patients.
The program’s global efforts began in 2011 in Angola where Texas Children’s physicians started screening and treating babies with sickle cell. To date, close to 200,000 babies have been screened with about one in 65 having sickle cell disease disease. Texas Children’s is also in Malawi, Uganda, Botswana and other areas of Sub-Saharan Africa screening and treating children with sickle cell disease, and training local physicians to do the same.
“Our hope is that there will be a day when the place where a child is born does not determine whether or not they survive this disease,” said Dr. Gladstone Airewele, director of Texas Children’s Global Hematology Program.
Click here to watch ABC-13’s segment about Yates’ patient Anaya Sparks. The 7-year-old triplet has sickle cell disease.