CRU, or Creating Real Unity, is a support group for teens living with sickle cell disease. It is designed to get the kids out of the hospital, where they already spend hours for appointments and receiving treatment. CRU offers teens the opportunity to find connections with others facing similar health challenges.
During frequent clinic visits and hospitalizations, teens living with sickle cell disease are provided with disease management but find difficulty navigating the impact of the disease on their lives. “So many social factors are being missed, but we’re trying to open up that space where they can find healthy ways to cope mentally and understand their diagnosis at their level,” said Chasity Woodard, a social worker in Hematology. Her vision was for there to be fun at these events, in addition to valuable learning to empower them to manage their disease independently, advocate for themselves and eventually successfully transition to adult medicine.
CRU is open to teens aged 13-19 and meets quarterly for networking and socializing, followed by a fun team-building event. As teens with sickle cell disease, they are confronted by issues such as the worsening of their disease, academic struggles that result from sickle cell complications and/or frequent absences, the desire to manage their health more independently and social isolation due to having a rare disease.
Their most recent event was at Beat the Bomb, an immersive escape room experience designed to mimic a video game. The event began with teens interacting with each other and staff volunteers from the Hematology program modeling how a team approach is necessary to provide the best care. The teens then worked together to complete a timed series of physical challenges and riddles, acting as a team to “beat the bomb” before it detonated and covered them in paint.
“I wanted to give them a space to have something outside of Texas Children’s,” explained Woodard. “The teens had a blast and were excited and engaged throughout the event. I don’t even remember them being on their phones,” said Woodard.
