Myasthenia Gravis may not be a disease name familiar to most people, but this chronic autoimmune neuromuscular disorder is estimated to affect approximately 20 out of 100,00 people in the United States. June is Myasthenia Gravis (pronounced My-as-theen-ee-a Grav-us) Awareness Month and an opportunity to educate the public on this disease that is often misdiagnosed.
“I was one of the lucky people,” said Sue Klinger, vice chair of the Myasthenia Gravis Foundation of America, Inc. board of directors. “I knew about it and when I was diagnosed I suggested to the neurologist that I thought I had an auto-immune disease.”
Myasthenia Gravis is characterized by fluctuating weakness of the voluntary muscle groups and affects people of either gender, any age and all races. It is not known to be directly inherited or contagious. Common symptoms for Myasthenia Gravis can include:
Unfortunately all of these are also symptoms for other diseases, such Multiple Sclerosis, and according to Mrs. Klinger, few doctors are familiar with Myasthenia Gravis and this combination leads to misdiagnoses. A diagnosis is confirmed with a blood test.
Mrs. Klinger, who is also a caregiver for her husband who has Parkinson’s disease, was diagnosed with Myasthenia Gravis ten years ago. “It is a fluctuating illness,” she said. “There are flare ups.”
Leni Fuhrman is a caregiver to her husband who has Myasthenia Gravis, and he has had to be hospitalized during such flare ups.
“He is doing pretty good right now,” Mrs. Fuhrman said of her 71-year old husband who was diagnosed with Myasthenia Gravis four years ago. “There have been periods where he was much worse and had swallowing difficulties, but he is in better shape than a lot of people.”
Mrs. Fuhrman said that fatigue is a significant issue for people with Myasthenia Gravis, and the muscle weakness can affect someone’s ability to lift their arms to wash their own hair, stand in the shower, and other basic activities of daily living.
“It is episodic and there can be side effects from the medications,” Mrs. Fuhrman explained, adding that her husband was misdiagnosed initially and was getting the wrong treatment, which led to hospitalization.
“It started off with symptoms of double vision,” she said of her husband’s disease. “Then he had slurred speech, a drooping eyelid and swallowing problems.”
Mrs. Fuhrman keeps her husband on a healthy diet, encourages him to nap and get moderate exercise.
There is not a cure for Myasthenia Gravis, but there are treatments available and the disease has been known to go into remission without specific therapy. Treatments will not cure the disease, but experts have found that patients do see improvement in their muscle strength from treatments.
Find a Myasthenia Gravis Foundation Walk in your area in June, join a support group near you, or download the Myasthenia Gravis Manual for Health Care Professionals to take to your doctor or dentist if you have concerns.
“The more people know about it, the better,” said Mrs. Fuhrman.
Family caregiver and author Lisa J. Shultz talks about how she starts the new year to have enough energy for caregiving.
If you aren't sure what elder care is and how your role as a family caregiver fits in, we've outlined different types of care in this article.
We have our top five blogs based on readership in 2019. Take a look at this list to review topics from bathroom hazards to caregiving myths.