The Scleroderma Foundation named Dr. Maureen Mayes, professor in the Department of Internal Medicine at McGovern Medical School, their 2017 Doctor of the Year in recognition of her ongoing work in patient education.
Mayes, who is also the founder and director of the school’s Scleroderma Clinical and Research Program, has published over 200 articles and reviews focused on scleroderma and clinical treatment trials. The Scleroderma Foundation previously gave her the Spirit of Hope Award and was named a Master of the American College of Rheumatology. According to the foundation, many know the “world-renowned scleroderma researcher and clinician” as the author of the patient resource book Scleroderma: A Guide for Patients and Families.
Mayes said the challenges and uncertainty surrounding scleroderma, also known as systemic sclerosis, put her in a unique position to educate healthcare professionals and patients alike. She chairs the foundation’s Patient Education Committee, and ensures brochures and learning materials are accurate. She also helped host McGovern Medical School’s first Scleroderma Patient Education Day in late September.
“There is a lot of inaccurate information on the web, unfortunately,” Mayes said. “We want to make sure the foundation has the most up-to-date and reliable information, and we also want to show people what clinical trials are available that patients might be able to participate in.”
While her work in educating patients is optimistic, Mayes said there is currently no cure for Scleroderma but she and other researchers have been making headway against the chronic disease for years. Currently, it’s estimated that about 100,000 Americans have scleroderma and since the disease often appears with symptoms similar to other autoimmune diseases, diagnosis is difficult.
When Mayes was in residency years ago, she was attracted to rheumatology by its level of challenge and, by proxy, to scleroderma due to its unknown nature.
“It’s somewhat mysterious in terms of what triggers it,” Mayes said. “Initially the belief on the part of the pharmaceutical industry was that it was one of those diseases that was essentially untreatable, but that’s no longer the case and we now have several treatment approaches.”
Over the years, the scleroderma clinical research community has become more organized and a series of clinics have been established around the country and beyond, Mayes said. Further research into the disease has revealed much over the years, including the discovery that the best opportunity to treat the disease is in the earliest stages of the disease. There are about 600 patients diagnosed with Scleroderma seeking treatment at the UTHealth Science Center, and although only a fraction will be in the early stages of the disease, they will still benefit from advances in medication.
“Once there is a lot of scar tissue in the lungs, that may not be reversible,” Mayes said.
For now, Mayes will continue diligently researching the disease and its potential causes. She said it was an honor to be named Doctor of the Year.
“We keep very busy,” Mayes said.