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.

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.

When I was first diagnosed with Myasthenia Gravis I distinctly remember being so frightened. I couldn’t tell you of exactly what my fear was based, but it was an overwhelming fear. It was as if someone had pulled a seat out from under me and I was falling into a deep, deep hole.

The fear turned into panic as my mind wrapped around all of the information that came with the knowledge of learning about the symptoms, the outlook and the treatment. When my neurologist recommended a Thymectomy as the main treatment to prevent the MG from worsening and to attempt to lessen the symptoms and the progression of symptoms, I felt trapped like a brown recluse spider trap.

I knew logically this was the best approach to take but at the same time I didn’t want to go through a major procedure that is like open heart surgery. I wanted to run away. I wanted to wake up and learn this was all a bad dream.

Making this decision wasn’t really that difficult as I first thought it would be. At that time my daughters were 16 and 5. I knew I wanted to be as healthy as possible for them as well as for me. So I chose the surgery. It was tough, but it was worth it.

When first being diagnosed with a life altering disease, don’t feel shocked that you are frightened and feeling trapped. Talk to your doctor, get help from family and friends and seek the help of a counselor if necessary, especially if you have difficult decisions to make.

Sjogren’s Syndrome has been hitting me really bad lately. I guess it has to do with the lack of sleep and a lot of blogging. The computer monitor hurts my eyes a lot. And not sleeping puts me into a flare. Plus not being on Humira has my immune system in havoc.

One thing I know that I need to do is to upgrade the indoor lighting in my home office. That will help my eyes a lot. I need a good desk light and some better lighting over all.