Myasthenia Gravis Awareness: Myasthenia.org Fact Sheet · Donate
Myasthenia gravis (pronounced My-as-theen-ee-a grav-us) is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. MG is not thought to be directly inherited (though it does occasionally occur in more than one member of the same family) or contaigios. Common symptoms can include: A drooping eyelid, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue, and difficulty breathing.
As a high school sophomore, Kelley Devincentis was the image of health — until muscle fatigue began overtaking her during workouts, rendering her limbs as heavy as anvils. Kelley found it increasingly difficult to even keep her head up, and by the holidays, she was slurring the words to Christmas carols and experiencing double vision which in turn had kids at school thinking she was “drunk”. Kelley let the kids around her assume her symptoms were that of intoxication and began her journey to find a solution.
After several misdiagnoses, Kelley learned she had myasthenia gravis, a disease she did not understand. “For years I was unable to perform even the basic human functions like climb stairs, walk, speak, smile, stand or swallow my own saliva. Even though I started the take medication, I had no choice but to go on life support three times.”
By college, the marketing major “had such bad slurred speech one day, I had to break down and tell everyone that this is what I have. I realized I shouldn`t be ashamed — it`s something that happened to me that I had no control over.”
In January of 1998 during one of her many stays in ICU, Kelly got the idea to start a Walk-A-Ton in her local New Jersey town. With just $100 of her own money, she gathered friends, family and even strangers to execute that first New Jersey Walk-A-Thon; and the results were staggering: with just over 100 people attending, Kelley’s event raised over $11,000!
New Jersey MG Walk has continued on for over 20 years, and today Kelly actively reaches out to others who are newly diagnosed with MG. Kelley is also a proud mother of a 8 year old son, who proudly sits with her during her IVIG treatments – and thinks she is the strongest mom in the world!
North Jersey MG Support Group
Staff Room A&B, Christ Hospital, 176 Palisade Avenue, Jersey City
May 10, June 14, September 13, October 11, November 8, December 13.
RSVP: Janice Greenberg morjan1027 @ gmail.com or 732 690-5987
South Jersey MG Support Group
Penn Presbyterian Medical Center, 51 N. 39th Street, Philadelphia PA
Wright Saunders Bldg. Medical Conference Rm.
Info and RSVP: Christine Hosay, 610-564-2772.