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Buford man raises awareness about rare disorder

Alexis Rodriguez named MVP by the Myasthenia Gravis Foundation of America

POSTED: May 22, 2016 1:30 a.m.
BY FRANK REDDY/For The Times

Alexis Rodriguez of Buford was recently recognized at the national level for his efforts in raising money and awareness for myasthenia gravis. He was diagnosed with the disorder 19 years ago.

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The first time Alexis Rodriguez walked into a support meeting for individuals with myasthenia gravis, all he could see was white hair.

While the disorder commonly affects men older than 60 and women in their 20s and 30s, it can occur at any age. In Rodriguez’s case, he was 23 years old when diagnosed.

Now, at age 42, the Buford resident is a lead volunteer with the Georgia Support Group of the Myasthenia Gravis Foundation of America. And leaders of the national parent organization said Rodriguez is one of the biggest champions for research and cure of the disorder in the country.

He was recently recognized nationally as an MVP by the Myasthenia Gravis Foundation of America for his work as an ambassador for the organization and advocate for the annual MG Walk, which raises money for patient services and research for those affected by the disorder.

“It was unexpected,” he said. “I work hard for our Georgia MG Walk every year, but I have never done it for the recognition. I do it so other patients with myasthenia gravis can meet others with MG, so they realize that they are not alone.”

A chronic autoimmune neuromuscular disorder, MG is characterized by fluctuating weakness of voluntary muscle groups. Considered somewhat rare, roughly 70,000 to 80,000 people in the United States have been diagnosed.

It can be a bit complicated explaining the disorder, but Rodriguez broke it down in a recent interview.

“The easiest way to explain it, is that there’s a bad connection between your nerves and your muscles,” he said. “Your brain tells your nervous system to tell the muscle to move ... Instead of having a nice, good connection, the signal doesn’t transmit to the muscle. So the muscle becomes fatigued and is not able to receive the signal.”

In Rodriguez’s case, the disorder causes him to have droopy eyelids and double vision, but he’s experienced other symptoms as well. Repetitive motions such as brushing his teeth and walking can become difficult for him. As a project manager for the Coca-Cola Company, he must find ways to cope on the job with the disorder. When driving, he has to wear an eye patch to alleviate double vision.

An affable man, Rodriguez laughs a little about his own experience with it.

“There are times when I see two of everything,” he said. “Sometimes, I have two wives, and that’s not my thing.”

But he’s always serious about his work, and folks have taken notice.

“Alexis is a true ambassador and leader for the MG community and has played an instrumental role in raising vital awareness and funds for myasthenia gravis,” said Rich Mauch, National MG Walk Director. “Alexis is a true MG Walk Hero.”

In his work with the annual walk — the fourth annual event was April 2 at Chamblee First United Methodist in Atlanta — and his contributions as a whole, Rodriguez takes “an aggressive approach.

“The more I can pitch in and the more that gets donated ... the more that can go for the cause,” he said.

One of the best things about the annual walk?

“For many people with MG, it’s the first time they’ve met someone like them who has it,” Rodriguez said. “Personally, I get to meet people with MG and let them know, ‘you’re not alone.’”

His own experience in learning he had the disorder when he was 23 years old was, like most cases of MG, unique.

“After having a headache for three days, I took some antibiotics thinking I had a sinus infection” he said. “Soon after my eyes stopped working properly. My double vision started and then the droopy eyelids. It took three months for a diagnosis.”

After his diagnosis, he joined a support group and advocated for research and a cure. He also hasn’t missed one of the walks since they began four years ago.

In the past couple of years, the walk has raised more than $40,000 — money that’s sent to the national parent organization. And that, Rodriguez said, is a huge victory.

Staying positive in the face of adversity has helped him do more than fight the disorder; it’s helped him thrive and aim to inspire others.

“When I was diagnosed 19 years ago, I had two choices,” he said. “I could either fall into the ‘why me’ category or I could say, ‘I’m going to kick some butt.’ I chose the latter.”

Those interested in contributing or attending a meeting, visit www.mggeorgia.org or www.myasthenia.org for more information.



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