Local Charity Provides Education and Support on Rare Disease

By: Kurt Buesching | May 29, 2012

Suzanne Rogers was seeing double, losing a tremendous amount of weight and having problems speaking. The actress, who plays Maggie Horton on the daytime soap opera Days of our Lives, has a rare neuromuscular disease called Myasthenia Gravis, but it took 17 doctors to make the correct diagnosis.

“They (the doctors) thought she was just being dramatic because she’s an actress,” said Agnes Wisner, director of the Myasthenia Gravis Association (MGA), which serves eastern Michigan. So she convinced the show’s writers to build the disease into the storyline, giving her character the disease she now lives with.

The autoimmune disease is rare – reported at 10 per 20,000 people and 7 per 10,000 in different studies, but argued to be vastly underreported. It’s often misdiagnosed as Parkinson’s disease, a stroke or another condition, and its symptoms can include muscle weakness in the eyelids, trouble breathing or seeing, difficulty walking and fatigue in the arms and legs.

“Often, people are being treated for years for another disease when in fact they have MG,” Wisner said. Yet once diagnosed, there are viable treatment options for the disease.

One man, explained Wisner, came to MGA and said he’d had multiple surgeries to repair droopy eyelids, when all along he had myasthenia gravis, which was causing muscle weakness in the eyelids.

MGA, which is based in Warren, provides education, support groups and other resources to myasthenia gravis patients and their families. But a big part of its work involves building awareness.

“Typically, no one is familiar with it until they’re diagnosed or until a family member is diagnosed,” Wisner said. “We’re trying to create some major awareness about the disease.”

In addition to providing information to physicians, MGA provides its members, which number at about 800, a wealth of information on issues like thymus gland removal, which reduces symptoms dramatically for many patients, and other treatment options.

The three-employee association mostly serves patients in the Metro Detroit area, but has helped patients as far out as Saginaw, and even neighboring states when called upon, said Wisner.

Funding comes from grants, donations and fundraisers like the annual golf outing in June – run by an MGA member – and the Weidenbach Walk/Run in May – also run by an MGA member.

For more information, visit www.mgadetroit-easternmi.org or call (586) 755-9100.