“Your sister has a brain tumor. Your airplane tickets to Boston are waiting for you.” In 1997, Mary Hughes got that call from her father, after her sister complained of seeing double. Mary rushed to Boston, where Dora, her younger sister by two years, was a resident in internal medicine at Brigham & Women’s Hospital in Boston. Several neurological exams later, Dora was diagnosed not with a tumor, but with multiple sclerosis (MS).
Mary, then a neurology fellow at the Medical College of Georgia in Augusta, knew little about MS, a progressive disease of the central nervous system that can affect everything from muscle and bladder control to vision and speech. “My sister started turning to me and asking, ‘Which medicine is best?’ and I didn’t know,” Mary says. “I felt the more I knew about MS, the better sister I could be. And the pressure was intense to be both family and professional support. That changed my career.”
She embarked on her MS education at a time when knowledge about the disease was in its infancy: The first prescription drug for MS, for example, was approved only in 1993. And one thing was clear: The difficulties of MS surpassed what medicine alone could address. There were psychological and physical adjustments, as well as societal assumptions about MS to combat. Dora, for instance, was told her medical career was over and she just assumed she couldn’t have children (which, she found out later, wasn’t true).
As Mary became more educated, she realized that those with MS need a more inclusive approach: “The medical profession didn’t look at the full person.” The upshot: In 2001, she started the Augusta MS Center at the Medical College of Georgia, early on developing a patient advisory council. The patients urged her to partner with physical and speech therapists and psychologists familiar with MS, and to develop educational programs for both patients and families. “I learned that something as simple as a button hook may have an enormous impact,” says Mary, now 41. “That’s not a pill or an injection; it’s just a button hook. So we started addressing issues outside the realm of normal practice.”
Now, Mary has moved on, opening another comprehensive MS center at the Greenville Hospital System in Greenville, South Carolina. Mary is also on the board of directors for the National MS Society and pushes on Capitol Hill for disability reform. Dora, whose MS is under control, has made a career of healthcare policy, formerly as an advisor to then-Senator Barack Obama, and now at the U.S. Department of Health and Human Services.
“Sometimes you don’t choose a journey,” says Mary. “The journey chooses you. MS found us. While we didn’t invite it in, we’ve tried to make the best of our response. We know what MS is like. So we want to make this process easier for someone else.”blog comments powered by Disqus