June is Myasthenia Gravis Awareness Month

To the Editor:

Gov. Dannel P. Malloy has declared June Myasthenia Gravis Awareness Month in Connecticut, to support the MGCT Foundation’s fundraising Walk on Saturday, June 7, in New Haven.

What is Myasthenia Gravis? It’s one of those rare auto-immune illnesses that can come on suddenly or gradually and change your life thereafter. “Myasthenia Gravis” means “grave muscle weakness.” It can affect muscles controlling swallowing, eyes, breathing and walking, as well as causing fatigue. It usually affects younger women and older men.

There are 70,000 MG patients in the United States, and probably more not diagnosed because symptoms aren’t yet severe. There are treatments, but no cure. (Websites such as MGWalk.org/Connecticut and mgfa.org provide information. There is also a Facebook page.)

Most doctors have little or no experience with MG patients and may not even suspect it when presented with someone with, for instance, drooping eyelids or other mild symptoms. Diagnosis can take time and visits to a number of different specialists.

Many people can function well with treatment. My husband (age 81) was not one of them; his illness came on suddenly while he was abroad on business. He flew home unable to drink or eat and went immediately to the hospital. There he was diagnosed, thanks to an alert neurologist, and started on treatment. There was some improvement over time, but also complications which resulted in his death after eight months.

A research project to test a new treatment for MG is beginning at 15 hospitals across the U.S. Neurologists at Yale-New Haven Hospital are participating in a double-blind study of this treatment.

There is a local support group for those with MG; it meets every other month at St. Vincent’s Hospital.

 

Pam Ritter

Fairfield

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