Teonna was born with sickle cell disease SS. She is the cofounder and CEO of SC RED (Sickle Cell Reproductive Health Education Directive), the first and only organization to focus on sickle cell and reproductive health. Teonna participated in a clinical trial in 2010 in which she underwent a bone marrow transplant. However, Teonna’s body rejected the transplant. In this blog, we’ll hear Teonna’s story about her personal clinical trial experience. In Teonna’s words, “When you see someone else who is really able to understand where you are and have empathy for you, it kind of empowers you to share your story.”
How do people with sickle cell disease find out about clinical trials?
Before considering a clinical trial, make sure you are aware of the risks and benefits and that the treatment may or may not work. One of the best places to find a clinical trial is from your medical team. Teonna learned about a clinical trial for a bone marrow transplant from her pediatric hematologist. She says, “My hematologist at the time asked me if I would consider joining a clinical trial studying bone marrow transplant. Because I didn’t have a perfect match, I learned about a clinical trial for a transplant where your sibling or your parent can be your donor.”
I think I want to enroll in a clinical trial, but how do I make that final decision?
Everyone has different priorities and responsibilities, so the decision-making process varies. Think about making a collective decision with your friends, family, and medical team. Speak to your employer to determine if your schedule can be flexible or if you can take some time off work.
Some people find it helpful to talk to other people who have gone through a similar clinical trial, or even read about their stories. If this is you, make sure to click on the links below to learn more details about Teonna’s experience in a bone marrow transplant clinical trial.
Finally, this decision is a personal one. A desire to contribute towards the advancement of science moves many patients to participate. But the decision can be an emotional one as well. Teonna relates, “I made the decision from a place of hopelessness and desperation because I didn’t have the quality of life that I wanted to have. I wasn’t living the life and accomplishing the things I wanted to accomplish.”
How might participation in a clinical trial shape my future?
Some people agree that participating in a clinical trial may change their future. Firstly, participants may take better care of themselves as they get better at self-care. Teonna agrees, “My life is totally different. I have learned how to manage my sickle cell disease better by staying hydrated and being really intentional about what I allow in my space through stress management.”
For Teonna, a big change that resulted from her experience in a clinical trial is advocacy work, speaking up and teaching others about sickle cell disease.
Teonna shares, “What’s amazing is that I’ve been thrown into this advocacy career, and I sit on this panel with the American Society of Hematology. So, everything has kind of come back full circle.”
Finally, choosing to be in a clinical trial may inspire others to do something new and courageous. Teonna encourages, “Looking back, I feel like I’ve been able to inspire people with my story…. It was kind of a difficult time, but a lot of beauty came from that. In a way, it was a blessing. My life is totally different now and I’m very grateful for that.”
Will I regret going through the process?
Again, each person’s clinical trial experience will be different. One constant, though, is that each person may have contributed toward advancing medicine and sickle cell disease research through their participation. “Although my experience didn’t go as planned, I still encourage others to participate in clinical trials. I often joke about how I single-handedly advanced the face of medicine because that is what clinical trial participation does, promotes research and advances medicine. Researchers have learned from my journey, so that they can make treatment better for other people in the future,” says Teonna.
Click on these links to hear more details about Teonna’s story:
- An article written by Teonna on Sickle Cell 101:
- A video from the American Society of Hematology titled, “How Far We’ve Come: Clinical Research and Sickle Cell Disease”:
- Click on these resources to find out more about how to search for clinical trials: