Columnists Health Health Matters

HEALTH MATTERS: Woman learns to live with myasthenia gravis

Imagine learning you have an autoimmune disorder that strikes people of all ages, genders and race at any moment in your lifetime. Tameika Isaac Devine was 15 years old when she first heard the words myasthenia gravis (my-us-THEE-nee-uh GRAY-vis) or MG. “I had no idea what that meant,” Devine said. “But I saw the way my facial expressions changed — one eyelid was very droopy and I was always tired.”

“Myasthenia gravis is a rare, non-contagious condition that typically affects women under 40 and men between 50 and 70 years of age, and is typically not inherited,” said Nancy Law, CEO of the Myasthenia Gravis Foundation of America. The word is from the Greek and Latin words meaning “grave muscular weakness.” MG causes drooping eyelids and extreme muscle weakness that impacts the ability to see, walk, swallow, eat, blink, breathe — even smile.

Devine’s diagnosis came a bit early for her age. Her parents became concerned with her appearance and talked to medical professionals to figure out what was wrong with her.

“It got to the point that by the end of the day, one eye would be almost completely closed,” Devine said. “I was a teenager, getting teased and I was miserable.”

According to the Myasthenia Gravis Foundation of America, it is estimated 14 to 20 people for every 100,000 persons are affected. Approximately 36,000 to 60,000 cases are reported annually in the United States. Due to the high number of misdiagnoses, it is estimated that 1 in 5,000 are unaware that they have MG.

The Office of Research on Women’s Health at the National Institutes of Health reports there are more than 100 autoimmune diseases and more than 75 percent of autoimmune patients are women.

To raise awareness about MG, June was designated as Myasthenia Gravis Awareness Month. In MG, the body’s immune system attacks the connection between the neurons and the muscle fiber, which affects the ability of the brain to control muscle movement.

One of the first symptoms of myasthenia gravis, and the most noticeable, is drooping eyelids. Other symptoms are mouth weakness, leading to trouble chewing, swallowing,
or talking, and arm or leg weakness. (Source: Children’s Hospital of Philadelphia)

Many people have no idea what MG is or what it looks like for an affected person. Devine has lived with MG since her teens.

“My parents had never heard of it before so my mom did a lot of research on the disease so we could learn more,” she said. “Of course, my parents were very supportive and made sure I took my medication.”

“Symptoms of myasthenia gravis vary from person to person and because each person’s experience with MG is unique, it is called the snowflake disease,” Law said. “This makes diagnosis challenging, and is compounded by the fact that the degree of muscle weakness can vary from person to person and day to day.”

While Devine faced many challenges living with MG, it did not take over her aspirations. Devine learned to recognize when she would have flare ups and feel the effects of MG.

Throughout her life, Devine didn’t let the occasional unusual appearance due to MG stop her from attending college and law school.

“I knew I wanted to be a lawyer and questioned whether I would because I didn’t know if I could handle the demands of law school,” she said. “But I pushed on and knew that I just couldn’t pull all-nighters and had to make sure I did not procrastinate on getting things done.”

After college and in spite of MG, Devine was on the air frequently.

“When I was on national TV, I had a hard time focusing because my eyes would droop,” she said. “It was embarrassing because I didn’t feel I looked my best.

“I get tired sometimes so I have to know my body and know when to take it easy,” Devine added. “Because I am in the public eye, I sometimes have to explain when I have the physical symptoms so people understand the drooping. Sometimes people think I have had a stroke.”

Myasthenia gravis is so rare, many physicians are not aware of the symptoms, making it even harder to diagnose. To diagnose myasthenia gravis, doctors will review the patient’s symptoms and medical history, and may conduct several tests, including muscle strength tests and imaging scans. (Source: Canadian Pharmacy and Myasthenia Gravis Foundation of America)

MG may not be diagnosed immediately because of its similarities to other autoimmune disorders. According to the National Institute of Neurological Disorders and Stroke, a doctor may perform or order several tests to determine the diagnosis, such as a physical and neurological examination; an edrophonium test; a blood test; electrodiagnostics; diagnostic imaging; and a pulmonary function testing.

“There are no known risk factors and no cure,” Law said. “Some effective treatments include medicines and surgeries that allow many MG patients to lead full lives with significant improvement in their muscle weakness. However, about 10-15 percent of those with MG are considered “refractory,” meaning current treatments do not work for them.”

The options for treating MG were limited when Devine was first diagnosed. Now, there are several options to help reduce and improve muscle weakness, which include performing a thymectomy to remove the thymus gland to reduce muscle weakness and the need for immunosuppressive drugs; prescribing anticholinesterase medications, which can improve neuromuscular transmission and increase muscle strength and/or immunosuppressive drugs to improve muscle strength by suppressing the production of abnormal antibodies; and administering plasmapheresis and intravenous immunoglobulin, a procedure used in the cases of severe MG.

“I take steroids and get plenty of rest,” Devine said.

MG is known to go into remission, which can be temporary or permanent.

“I had a five-year remission in my 30s,” Devine said. “Now, when I experience symptoms when I am tired or stressed (which is often with my job), I take medication when I feel fatigued or see my eye dropping.”

With treatment, people with MG can lead normal or nearly normal lives.

Devine is a wife and mother. She is also the founder of the Possibilities Institute, a peak performance consulting and public speaking firm specializing in providing personal and professional development for people who are called to a life of change. At age 29, Devine became the first African American woman elected to the Columbia, South Carolina, City Council and now serves as the mayor pro tem. She also is a partner in her own law firm, Jabber & Isaac.

Resources:

American Autoimmune Related Diseases Association – www.aarda.org

Myasthenia Gravis Foundation of America – www.myasthenia.org

The Mayo Clinic – www.mayoclinic.org

National Institute of Neurological Disorders and Stroke – www.ninds.nih.go

Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to healthmatters@wavepublication.com and look for her column in The Wave.