June is a special month to those of us that have Myasthenia Gravis and reside in the United States because it our time to share awareness of this rare disease. I was diagnosed with MG the month that I turned 40 and it was a complete surprise. What began as one eyelid drooping soon became body weakness, extreme fatigue and a constant choking sensation.

This is not always the case as MG can be only “occular” meaning that it’s symptoms remain with your eyes only. Those symptoms are often drooping eyelids (ptosis) and/or double vision. It can progress to facial muscles and stop there too. That can mean a drooping mouth, difficulty smiling, even a feeling that your forehead muscles are drooping.

The Myasthenia Gravis Foundation of America is one of the leading non-profits that provides education, support and funding for research about the cause(s), treatments and one day a cure for this disease. You can read about the symptoms, current treatments and how you can volunteer or make a donation from their website. You can also find a local support group.

The Muscular Dystrophy Association also provides information, research and treatment through their clinics. I see a neurologist at an MDA clinic and am grateful for their help in providing me with a scooter also. For further information, call your local MDA office.

Right now I take Mestinon and Cellcept and do have flareups once in a while. I will continue writing about my journey with MG all during the month.

Here’s a video that I’ve posted before on my blog, but it is so powerful because it shows you what a boy at the age of 13 goes through with Myasthenia Gravis: