Texas Children’s celebrates World Sickle Cell Day

June 25, 2019

The first six years of Patrick Prudhomme’s life were touch and go. Born with sickle cell disease, the young boy experienced frequent episodes of pain when his sickled red blood cells blocked the flow of blood and oxygen to his body. He also endured various other complications of the disease, some of which landed him in the intensive care unit and had his family extremely worried about whether he would survive.

“It started with a fever and escalated quickly after that,” said Patrick’s grandmother, Joyce Watson about her grandson’s last major flare up. “I thought we were going to lose him.”

Today, thanks to the treatment Patrick receives at Texas Children’s Sickle Cell Center, he is a healthy 14-year-old ninth grader. Patrick has not had any pain or major health complications since he started the medication, hydroxyurea, eight years ago.

“I love Texas Children’s,” Patrick said. “Before I came here, I didn’t know what was going to happen to me.”

Patrick’s story, as well as those of many other sickle cell disease patients, were celebrated on June 19 in honor of World Sickle Cell Day, a time sickle cell patients, families, physicians, researchers and others join 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 in the Texas Children’s Sickle Cell Center on the 14th Floor of Wallace Tower, the celebration provided fun, educational activities for all. Patients enjoyed refreshments, a variety of arts and crafts, and a visit from Elsa, one of Texas Children’s therapy dogs who helps comfort patients during their stay at the hospital.

See photos from the event below.

Family members and friends gathered information from various community organizations such as Supporting Our Sicklers (S.O.S.), Sickle Cell Association of Texas Marc Thomas Foundation, Novartis, H-SCOUT and The Periwinkle Foundation. They also heard from Dr. Amber Yates, co-director of Texas Children’s Sickle Cell Center.

“The work that is currently being done to find more treatments and hopefully a cure for sickle cell is extremely exciting,” Yates said. “I would never have imagined there would be this much involvement around sickle cell disease right now, but there is and it’s great.”

Some of those advancements include a FDA medication to help treat the symptoms of the disease in children 5 years old and older, Yates said. Another medication was recently granted accelerated approval pathway by the FDA and should be available for patients in the next one to two years. Other medications that would help patients during flare ups also are being studied.

Yates said gene therapy is another treatment being researched. In this therapy, the patients’ stem cells are coded to make non-sickled hemoglobin. This therapy offers another potential curative therapy for this disease.

Because this therapy could be a cure for the disease, Director of Texas Children’s Cancer and Hematology Centers Dr. Susan Blaney said Texas Children’s is playing a large role in the research going on surrounding sickle cell disease and that our experts are dedicated to finding more effective treatments and ultimately a cure for the disease.

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 Sub-Saharan Africa as well as training local physicians to do the same. 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 understand that this disease is life changing and that it affects people of all ethnicities across the world,” Blaney said. “That’s why we are here today recognizing you and renewing our commitment to tackling this disease.”

To learn more about Texas Children’s Sickle Cell Center, which serves patients from across the globe, click here. To watch Yates dive into the ins and outs of sickle cell disease on TedEd, click here, and to read a blog by Yates about sickle cell disease and why we celebrate World Sickle Cell day, click here.