Manager, Community Engagement, American Society of Hematology Research Collaborative
Her story: When Shauna Whisenton, 42, received a bone marrow transplant (BMT) 11 years ago for sickle cell disease (SCD), her family sang “Happy Birthday” to celebrate her new life. At the time she was only the 11th person to participate in a clinical research trial for a haploidentical, or half-identical, BMT. So while it was hard to predict exactly how the surgery would go, her doctors estimated that she had an 80% chance of being relieved of the debilitating pain she had experienced for so long. Her then-11-year-old son Dorian offered his bone marrow – a perfect 50% match to hers for the protocol – and hope was in the air. “I just want you to be better,” he’d told his mom back then. “I don’t want to see you leaving the house in an ambulance again.” And his wishes largely came true. Six months after the surgery, Whisenton was virtually free of her most grueling SCD symptoms. Now, as the manager of community engagement at the American Society of Hematology Research Collaborative (ASH RC), she spreads the word about her experience and the benefits of participating in clinical trials.
Her life before the surgery: “My fingernails were hurting. My eyebrows were hurting. Everything was hurting,” Whisenton said of the pain that began once she reached adolescence. But she pushed through, eventually got married and had children, and for a while things seemed okay. However, after she had her third son, complications emerged. She developed protein S deficiency, which left her body prone to blood clots. She experienced tiny bone fractures, which doctors believed were related to SCD and aging. Emergency room visits became routine.
A path toward recovery: “Anything worth having is worth fighting for,” Whisenton’s grandmother told her a year after her BMT. “You tough it out.” Whisenton took the advice to heart for good reason: She had just entered a rehabilitation facility to recover from two spinal surgeries related to a staph infection near her spine. And over a 25-day period, she weaned herself off opioids, which she had taken for 30 years to manage pain. She also learned how to walk without a cane. She meditated, did yoga, ate healthy food, and spent time in nature, most of which she practices today.
A life without pain: “Your life is so different,” Whisenton’s three sons tell her today. They enjoy activities, like cooking and travel, that she couldn’t fully participate in before. She also travels throughout the country to meet others with SCD and to share her experience about participating in clinical research. Whisenton’s goal is to help others with SCD live a full life, like the one she has now. “I don’t experience any pain,” she said. “I haven’t for years.”
The future of research: Whisenton’s personal experiences inform her work with ASH RC which includes engaging with the SCD community to ensure that SCD research is informed by the needs and desires of those living with and caring for those with SCD. This includes research and medical practices that focus on the whole person – not just the biology of disease. This may range from social concerns (like how patients are treated in the hospital to fears children may have about maintaining friendships while being out of school) to physical aspects (like the benefits of diet and physical exercise) that “all have an effect on a person,” she said.