Resident with Myasthenia Gravis Continues Fight Against Autoimmune Disease

Kelley DeVincentis sits and plays with her 13-month-old son Nicholas. She picks him up and hugs him. A few minutes later she gets up and makes a bottle for him. After he eats, she takes up upstairs and puts him down for a nap.

DeVincentis has no trouble walking around or moving at all. But it wasn’t always this easy.

DeVincentis has Myasthenia Gravis (MG), a rare, chronic autoimmune neuromuscular disease that affects voluntary muscle movement. MG is caused by a defect in a transmission of nerve impulses. The immune system produces antibodies that destroy or block the receptors for acetylcholine, which helps generate muscle contractions. 

DeVincentis was first diagnosed with MG as a teenager. She would be playing soccer and her knees would give out, causing her to fall. She also fell at the end of a ski run one time.

“I honestly didn’t think much of it at first,” DeVincentis said. “But then I couldn’t speak properly one day. My mother thought I was having a stoke.”

DeVincentis saw several doctors, who had difficultly diagnosing her condition at first. She was eventually diagnosed with MG. She was in and out of the hospital several times as a teenager. An estimated 35,000 to 70,000 people in the United States suffer from MG. It can be fatal is left untreated.

“Many people are often misdiagnosed with the disease,” DeVincentis said. “The symptoms are common of other diseases and medical conditions, so it can be difficult to narrow it down to MG.”

DeVincentis, who received a master’s degree in Business Administration, founded the Garden State Chapter of the MG Foundation Inc. to increase awareness about the disease.

The 14th annual MG Walk-A-Thon will be held at 10 a.m. on Saturday, May 7 around Packanack Lake. DeVincentis said the genesis for the Walk-A-Thon came to her when she was being treated in the hospital.

“I thought to myself that something has to be done to let others know about MG,” DeVincentis said. “People with the disease also need a place to come together, just like people with other diseases come together for walks. We all need to come together and support each other.”

The Walks have raised more than $265,000. Donations are used for research, patient services, and educating others about MG.

“To see these people come up to me at the walks crying, saying ‘thank you for this’ is so wonderful,” DeVincentis said. “People who suffer from MG need to know there is a support group out there for them. They are not alone in their fight.

“When you are first diagnosed with an autoimmune disease, at first everyone is all in. They ask you: ‘How can I help you and what can I do?’ But this is something I have to live with for the rest of my life. You really find people who are your core group of people and friends.”

To talk to DeVincentis and see how she conducts herself, it is clear that she has not let MG limit her in how she has lived her life.

“I had these dreams of going away to college and working in New York City and being an executive. It didn’t work out that way, but so what,” DeVincentis said. “I still got married, had a child, and love my life.”

DeVincentis pauses for a second and looks at Nicholas.

“And this little guy, he’s a miracle,” she said with a smile.

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Editor’s note: For more information about the MG Walk-A-Thon visit www.mgnjwalk.org or call 800-437-4949.