Health care educator, patient advocate, minister, president and co-founder of the Sickle Cell Association of Texas Marc Thomas Foundation
Her story: In 1997, Linda Thomas and her husband, Pastor Marc Thomas, began the Sickle Cell Association of Texas. Pastor Marc suffered from sickle cell disease and passed away in 2005 at the young age of 46. As President and CEO of the organization that would later bear her husband’s name, Linda is not only keeping her husband’s legacy alive but providing vital services to the sickle cell community in Texas, including health education to patients and health care professions as well as advocacy on behalf of patients. Linda was instrumental in getting legislation passed for newborn sickle trait testing in the state of Texas. She currently oversees three office locations in Houston, San Antonio, and Austin.
Her inspiration: “I do what I do because I never want others to experience the loss and the tragedy of a beautiful, vibrant life. When my husband passed away from sickle cell disease, people told me I had to keep going to keep his legacy alive. What inspires me are those that are fighting everyday against sickle cell. And also believing and trusting that there will be a universal cure.”
Biggest challenge: “[Sickle cell] is not given the same awareness, support, and funding as other genetic conditions. The emergency room is also a huge challenge: A lot of our sickle cell families are viewed as drug seekers.”
What many people don’t know: “There’s a stigma that sickle cell is only a ‘black disease.’ But we don’t just focus on African-Americans in our outreach. We raise awareness in the entire community. Texas has a large Hispanic population and we have quite a few Hispanic families that we serve. Over the past 20 years, we have assisted dozens of Hispanic individuals with sickle cell disease. We provide specialized services for the Hispanic population in Texas, including bilingual interpreters, Spanish-language literature about sickle cell disease, and free testing for sickle cell. Unfortunately, we still have a long way to go in terms of educating people about who is vulnerable in other populations. Hispanic people are also vulnerable and need to get tested. Everyone needs to be educated about sickle cell disease and its impact.”
What keeps her going: “It’s the love that I have for the families that we serve. Whenever I have a bad day, I remember those that are suffering. They are an inspiration and a source of encouragement to keep fighting. My faith in God also keeps me going.”