Author: Amanda Vassall (Sick Cells)
Meet Terrance Hill —A Sick Cells Ambassador, passionate policy-transformer and a diligent community member and friend.
To be an Ambassador, all you need is a passion for helping people with sickle cell disease and the willingness to make your voice heard. Ambassadors represent a variety of stakeholders, including patients, caregivers, and siblings, who have experience in all different areas of advocacy.
When we think of a community member who is as equally passionate in their advocacy and pleasant in their demeanor, we think of Terrance Hill. Terrance, 40, lives in the Chicagoland area and is immersed in his local sickle cell community.
Terrance Hill has seen his fair share of tough days. He was born with sickle cell disease (SCD) and suffered a stroke at the age of seven which led to him relearning how to walk. Growing up in Chicago’s brutal winters didn’t make things easier. A mixture of the cold weather and iron overload from blood transfusions led to even more complications. He received a left hip transplant and ongoing chelation therapy to remove the excess iron from his body.
After battling sickle cell for 30+ years, Terrance received a successful stem cell transplant in 2016. His doctor deemed him a good candidate for the procedure because of the lack of crisis and complications he was having at the time. Terrance considers himself “half-cured” because he still lives with the sickle cell trait. However, the transplant has proven to be beneficial.
“Since the transplant, I’ve had energy to do more,” said Terrance. “I exercise more often, and I am able to work longer hours at my job.”
After recovering from his bone marrow transplant for two years, Terrance was eager to return to the adult sickle cell support group he once regularly attended at UI Health. “I had to focus on getting better after my transplant, but I was missing everyone and was happy to get back,” he said. The group serves as a space to support, share and learn from each other’s experiences. They also focus on ways to help improve the sickle cell patient experience at the hospital.
Terrance also works with the Sickle Cell Disease Association of Illinois (SCDAI). Whether it’s calling his local and state representatives to get sickle cell-related bills amended or attending the annual Walk-Jog-Bike-A-Thon, the local Chicago sickle cell disease community can count on Terrance to be there whenever he can.
Most recently, and on a global scale, Terrance is working alongside the Global Healthy Living Foundation to educate the community about the effects of COVID-19. As a representative of the sickle cell disease community, he helps share information about precautions to take to avoid contracting the disease and how to register for the sickle cell COVID-19 registry.
We asked Terrance what motivated him to stay involved in the community post-bone marrow transplant and he said, “just because I was feeling better doesn’t mean someone else is.” We’re looking forward to seeing how Terrance continues to lead in the community in 2020 and beyond.
