MYASTHENIA GRAVIS AWARENESS MONTH

MYASTHENIA GRAVIS AWARENESS MONTH

June is Myasthenia Gravis awareness month. On June 11th, the Mayor will issue a proclamation recognizing this disease at the beginning of the City Council meeting. As the Leader of the Abilene Support Group, I ask for your support in spreading the word about this disease, and would welcome the opportunity to visit with you. Every year I hear from more people who are grateful they are not fighting this disease alone. {{more}} Myasthenia Gravis is a chronic autoimmune neuromuscular disorder that is all-too-often unknown to 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. The rate of MG is 20 per 100,000. Just a few years ago, it was 1 per 40,000. Education and awareness bring diagnosis and help to new patients every day. The most common age at onset is the second and third decades in women and the seventh and eighth decades in men. As the population ages, the average age at onset increases correspondingly; now males are more often affected than females, and the onset of symptoms is usually after age 50.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 causes disability and in cases death. More research and education is needed.I was diagnosed with MG thirty years ago. The onset of my disease was unusual in that it was so quick and severe. 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 in that I was almost immediately accepted for a clinical study at Southwest Medical Center. 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, 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 think the most common comment made to a person with MG is, ‘but you don’t look sick.’ That in itself makes the disease had to diagnose, quite often MG patients were initially labeled hypochondriacs or just lazy. Recall reading books set in the 1800s where the women laid in bed, and were exhausted all the time? They probably had MG! You learn to deal with this disabling disease one day at a time. My support system is my family and friends. For more information on MG, please visit:http://www.ninds.nih.gov/disorders/my… or http://www.nwtcmg.org/There is no cure for myasthenia gravis. However, the prognosis has improved in recent years because of research and new medications. If you would like more information about the Myasthenia Gravis support group please call Lydia Long at 676 4068 or email drlongbailey@yahoo.com. Together we can help find a cure. Please show your support for finding a cure by attending the June 11th city council meeting.