For Deborah Cooper, getting diagnosed with myasthenia gravis was the easy part. Everything that spun out of that diagnosis was what really turned her life upside down.
It started innocently enough. Cooper is legally blind, and three years ago she was visiting her eye doctor at the Medical University of South Carolina for a regular appointment. Cooper was told to open her eyes, and she did… at least, she thought she did. When the doctor asked her again, she insisted her eyes were open. Cooper’s eyelids had to be manually lifted, and that’s when she first heard the name MG—she was referred to a neurologist at the University, who confirmed a diagnosis of myasthenia gravis.
In a way, Cooper was lucky to have a specialist who recognized her eye muscle weakness as a sign of MG.
Many healthcare providers and patients aren’t as familiar with the disease or may mistake MG symptoms—which can include drooping eyelids, blurry vision, arm and leg weakness, and difficulty swallowing, breathing, and speaking—with other conditions. Cooper’s own family doctor admitted he didn’t know a lot about MG. And living in a small community in South Carolina, it was next to impossible to find anyone who’d even heard of the disease, let alone someone who was actually living with it. As her symptoms worsened and she began experiencing both the side effects of treatment and challenges getting insurance to pay for that treatment, what Cooper really needed was the support of people who knew exactly what she was going through.
Cooper’s situation is perhaps typical of the estimated 36,000 to 60,000 MG patients living in the United States—although the real number of people living with MG is likely higher, simply because not enough patients and doctors have heard of it.
When Janet Myder moved to South Carolina from Maryland, she brought with her years of experience living with MG. She was used to attending support groups, so when she saw there were none available in South Carolina, she decided to start one herself. Along with Julian Carnes, Myder founded the Lowcountry SC Myasthenia Gravis Support Group in November, 2010. While the group doesn’t offer specific treatment or medical advice, they do bring in guest speakers and doctors to help members better understand the disease and the treatment landscape.
Since finding out about the group, Cooper has been a regular attendee, even if it means hitching rides with other patients. For her, it’s worth it. Talking to other patients about everyday challenges has helped her adapt to the limitations of what she can accomplish. It’s also helped her accept that she doesn’t have to try and accomplish too much on any given day. It’s that small but tangible benefit, along with the chance to connect with others who understand what she’s going through, that makes the journey with MG just a little bit easier for Deborah Cooper and others like her.
