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Myasthenia Gravis Awareness Month 2011

Posted by Connie on Sunday, June 5th, 2011 at 5:49 pm and is filed under Advocacy, Chronic Illness, DisABILITY Advocate, Health Information.
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June is Myasthenia Gravis Awareness month and for 2011, the  main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.

Myasthenia Gravis Awareness

As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.

I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.

The Myasthenia Gravis Foundation of America describes MG as:

Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.

My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.

MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.

Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.

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2 comments

  1. I will tweet it. Bless you my friend, praying for a cure… xo

    comment by Danna — June 5, 2011 @ 11:34 pm
  2. I fewl the same boat u r floating about a year ago two of my kids were diagnosed with this and have been fighting this every since i also go test and can i had the same thing but never showed n e symptoms

    comment by Andrea — July 24, 2012 @ 7:25 pm

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