For the second consecutive year, Texas Children’s Sickle Cell Center hosted a celebration in honor of World Sickle Cell Day. On June 19, sickle cell patients, families, physicians, researchers and others joined forces to raise awareness about sickle cell disease, an inherited red blood cell disorder that affects about 100,000 Americans and many more worldwide.
Held at Texas Children’s Pavilion for Women, the celebration began with a greeting from one of Texas Children’s Hospital’s most friendly employees, Elsa, one of three therapy dogs who helps comfort patients during their stay at the hospital.
Notable presentations, given by Texas Children’s faculty, reviewed the historical considerations of sickle cell and advancements in care and therapies.
“Our team is doing a great job developing drug strategies, but we do have room to grow,” said Dr. Donald Mahoney Jr., director of Texas Children’s Hematology Center. “Our goal is to make sure the disease is no longer progressive and debilitating.”
Dr. Alex George, co-director of Texas Children’s Sickle Cell Center, highlighted four elements that are essential to Texas Children’s methodology of helping reverse this outlook: patient care, education, research and advocacy. 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. Since 2011, these efforts have been expanded globally to Africa, where many more people suffer from the disease and screening and treatment are limited.
Texas Children’s is now treating children with sickle cell disease in Angola, Malawi, Uganda, Botswana, and other areas of Sub-Saharan Africa as well as training local physicians to do the same. Dr. Parth Mehta, Director of the Global Oncology Program, and Dr. Peter Wasswa, Director of Hematology for the Global HOPE Hematology/Oncology Pediatric Excellence) Program in Uganda, discussed the various milestones of the programs including the estimated 245,000 babies who have been screened with about one in 65 having sickle cell disease.
Another memorable aspect of this year’s ceremony were the family experiences which reflected on the Center’s individualized course of treatment including 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.
Uduak Ekaette and her 15-year-old son have experienced sickle cell care in a low-resource setting having lived in Nigeria, West Africa, and he now receives treatment at the Sickle Cell Center which she describes as a place of hope.
“I really have been blessed in unmeasurable ways by my interactions with the staff at Texas Children’s Hospital,” Ekaette said. “Our experience has been fantastic.”
Maya Cooper, mother of a sickle cell patient, said her family also has had a great experience at Texas Children’s Sickle Cell Center.
“They always strive to keep us in the loop, keep us educated about what’s going on,” Cooper said. “I feel like we can give our input into decision-making, which is a big deal.”
The Coopers moved from San Antonio to be close to family and friends and to receive treatment at Texas Children’s. Cooper’s husband, Ishmael, said their goal is to have their child with sickle cell disease live a normal life.
“Although it is really hard, we do it,” he said. “And it’s all because of Texas Children’s Hospital.”
The Sickle Cell Center also collaborates with organizations across the region to help educate people about sickle cell disease and advocate for a cure. Partners of the Sickle Cell Center that were present during the celebration were; The Periwinkle Foundation, Sickle Cell Association of Texas Marc Thomas Foundation, As One Foundation, Novartis Hematology, and Supporting Our Sicklers (SOS). Each organization provided educational information about sickle cell disease or trait. The Houston Health Department also was present to discuss the importance of newborn screening, improving access to care, and ultimately resolving the health disparity issue.
“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 which focuses solely on children with sickle cell disease. Our hope is that this event will grow more each year.”
To end the celebration, attendees were able to view a portion of the Texas Children’s Ugandan World Sickle Cell Day Ceremony which featured a song and dance rendered by children. The song’s lyrics aptly captured the spirit of the day – “…let’s come together in the fight for sickle cell!”
Click here to read a blog by Jamilah Cummings, the mother of Joshua, a patient sickle cell disease at Texas Children’s Hospital.
To learn more about Texas Children’s Sickle Cell Center click here.