Gene therapy recipient, founder of nonprofit group
Her story: It has been almost six years since Tesha Samuels, 41, first described her sickle cell journey for NHLBI’s Today’s Faces of Sickle Cell series. It was a journey marked by frequent – sometimes daily – pain crises. “I dream of a day in the near future when I can wake up and not have any pain at all. That’s my dream,” she said back in 2017.
Turning point: Over the years, Samuels has tried many approaches to ease her pain, including hydroxyurea and monthly blood transfusions. Nothing seemed to work. Then she found out about an NIH clinical trial for an experimental gene therapy procedure for severe sickle cell disease. In March 2018, she became one of only a handful of people then to receive an autologous gene therapy transplant, in which a patient’s own stem cells are collected from their bone marrow, treated with a gene that produces healthy red blood cells, and returned back to their body with the aim of curing the disease.
Life after gene therapy: “I went from pain every day to barely or no pain. I didn’t think I would ever achieve that,” said Samuels, who is currently an administrative manager for an IT consulting firm in North Carolina. “Everything is different after the transplant. My zest for life is different. In the past, it was all about surviving. Now, I’m thriving. It is a dream realized.”
Empowering others: One of the things Samuels says she’s most proud of is starting her own nonprofit organization. She is the founder and president of the Maryland-based Journey to ExSCellence, which seeks to raise awareness about sickle cell disease and improve the quality of life of survivors by providing medical, social, financial, and professional development services to those with the disease. “I want to give back to others not as fortunate as me,” Samuels said.
Words of wisdom: “Be your own billboard,” Samuels said. “I wish more people would be willing to share their sickle cell disease status. Let people know about your journey, your pain. The more people can put a face to the disease, the better we can combat the stigma together and recognize the excellence that is in us.”