They thought she was drunk or aloof — But it was serious, chronic disease
BLOOMFIELD — Imagine going up a flight of stairs, and the muscles in your legs suddenly give out. Or not being able to hold your arms up long enough to brush your hair.
It happened to Kelley DeVincentis when she was just a teenager. People assumed she was intoxicated or acting disinterested, but her condition was much more serious.
DeVincentis was diagnosed with myasthenia gravis, which is a rare, autoimmune, neuromuscular disease that can cause severe weakness in any voluntary group of muscles or, in DeVincentis' case, over her entire body. In that condition, known as fully generalized MG, weakness can also plague involuntary muscles, like those used to breathe.
For a time, DeVincentis was unable to walk, talk, chew food, swallow saliva, or open or close her eyelids, and she was on life support three times. During one of those times, a doctor told DeVincentis she had to accept her disease. She needed only to write down one word as her response: "No."
"I get that I have MG, I know what I have to do to manage it, but I don't accept it." DeVincentis said. "I don't accept this lifestyle for myself or for others who are being diagnosed with this."
It took eight years — and some revolutionary treatments for the late 80s and early 90s, when DeVincentis first got her diagnosis — for her to be able to fully manage the disease to the point where she could finish high school, go to college, and get a job.
"It is cruel to have those symptoms, to be unable to walk, to be unable to talk, to be unable to take care of yourself. But it's also so isolating and alone. You feel like, how can anyone understand me?" DeVincentis said, adding that she used to tell people she had multiple sclerosis instead, because at least they would have heard of MS before.
As her condition improved, DeVincentis started to think of ways she could raise awareness of this rare disease. With $100 of her own money, she started an annual walkathon in Wayne, which ended up running for nearly 20 years straight, bringing in about $500,000 for MG medications and treatments.
A year and a half ago, DeVincentis "retired" from running the walkathon, but it has since been taken over by the national Myasthenia Gravis Foundation of America, and the 2018 edition will be held on Sunday, June 10, at Brookdale Park in Bloomfield.
MGFA will also honor DeVincentis, who played a key role in convincing the organization to launch similar walks throughout the country, as its New Jersey MG Local Walk Hero.
She said that honor is secondary to the feeling of unity that comes from participating in one of these walks, and the idea that while there may be no one, typical MG experience, those with the disease and those who learn about it can come together to discover a better quality of life and eventually, a cure.
For more information, go to MGWalk.org.