June Is Myasthenia Gravis Month.

June Is Myasthenia Gravis Month.

By Floyd Miller

 

 

 

June is Myasthenia Gravis month, and once again I ask the people of Abilene to show their support of this rare and potentially fatal disease. Mayor Norm Archibald will issue a proclamation during the June 12 regular city council meeting at 8:30 a.m. in city council chambers, recognizing June as Myasthenia Gravis Awareness Month please come and show your support. Myasthenia Gravis is a chronic autoimmune neuromuscular disorder that is all-too-often unknown to {{more}} the general public and undiagnosed by many in the medical community. Myasthenia Gravis has no known cause or cure. It can affect all races and both genders, and it can occur at almost any age. MG means “grave muscle weakness.” The disease can involve any voluntary muscles, and most commonly affects those that control eye movements, eyelids, chewing and swallowing, coughing and facial expression. MG also can affect muscles that control breathing and movement of the arms and legs. Although medications and treatments are available, the disease can cause disability and death. More research is needed.The mission of the MGFA , founded in 1952, is to facilitate the timely diagnosis and optimal care of individuals affected by MG and closely related disorders and to improve their lives through patient services, public information, medical research, professional education, advocacy and patient care. Throughout the year, and especially during its annual MG Awareness Month, the MGFA utilizes education and outreach in an effort to increase awareness of MG. I was diagnosed with MG thirty years ago while attending my sophomore year of college at Southern Methodist University. The onset of my disease was unusual in that it was so quick and severe it was easier for doctors to diagnose. People can have an undiagnosed case for years as the symptoms fluctuate depending on stress, heat and a variety of other factors. I was fortunate that a friend had heard of a researcher at Southwest Medical Center conducting clinical studies. As a newly diagnosed patient I was eligible to participate in clinical trials for a variety of drugs. Treatment of myasthenia consists of attempting stop your body from producing the antibody that causes MG. Treatment therefore consists of a variety of immunosuppressant drugs along with their ‘side effects’ and for more severe cases a thymectomy, to ‘maybe’ lower the production of antibodies and also plasmapheresis, which filters out the antibodies. People with myasthenia spend a lot of time becoming educated about their disease, just try explaining the difference to a doctor between feeling tired from MG and all of a sudden feeling tired from what turns out to be anemia caused by the medications. MG is can be an extremely mercurial disease, one day you may literally be in a hospital ICU on a ventilator, you receive plasamapheresis and two days later you are back at work. I eventually, married, had a daughter and was able to eventually complete a PhD in Criminal Justice, and how true the adage “those who can’t teach.” You learn to deal with each day as it comes. I am currently retired, living in Abilene, and involved our community. My support system is my family and friends. I will accept the proclamation from Mayor Archibald, June 12, as the Abilene area Myasthenia Gravis support group leader. Proclamations are issued at the being of City Council meetings and you will have the opportunity to leave before the regular meeting. If you would like more information about the Myasthenia Gravis support group please call Lydia Long at 676 4068 or email drlongbailey@yahoo.com. I hope you are not too tired to come!