It is a disease that affects .0002 percent of the nation. It is very rare, and right now, there is no cure.
For the people who suffer from Myasthenia Gravis (MG), a form of muscular dystrophy, it is real and life-changing.
Tim Szymanski is the public information officer for Las Vegas Fire and Rescue. He is the guy often seen on television news reports, talking about fires and fire safety.
In 43 years on the job, he's tried to keep himself out of stories.
But three months ago, Szymanski was diagnosed with MG, a disease so rare it's almost unheard of. Szymanski, however, had heard about it - 40 years ago.
In an exclusive sit-down interview, Tim Szymanski and his wife, Ellen Szymanski, shared their personal story publicly for the first time.
The health concerns started two years ago, when he noticed his right eye would not stay open.
"It was bad to the point that we actually had to use Scotch Tape to hold my eye open, or if I was driving, I'd have to hold my eye open. But I kept thinking it would go away," Tim Szymanski recalled.
It never did.
Tim Szymanski saw his physician every year, complete with blood tests, and everything came back normal.
"I'd go out in public, and people were commenting to me, and they'd say, ‘I saw you on the news and I noticed your eye was closed. Are you all right?' And I said, 'I think it's an allergy or something.' I was always finding an excuse for it," he said.
Ellen Szymanski suggested her husband see his department physician, who referred him to a neurologist.
"Then he called back and gave me the diagnosis," Tim Szymanski said.
Myasthenia Gravis is a neuro-muscular disease that causes weakness in the body, and by recent accounts from the Centers For Disease Control and Prevention, it affects only 14 to 20 people per 100,000.
Rare, yes, but Ellen had heard that name before - when she was studying to be a nurse 40 years ago.
"We had to do something for a thesis, and I picked Myasthenia Gravis because it was so rare," Ellen Szymanski recalled.
"All I've heard about for 40 years is Myasthenia Gravis. Maybe I've got Myasthenia Gravis. And I go to the doctor, and he says, 'Guess what you've got?'" Tim Szymanski said. "So, it's like she knew 40 years ago."
FOX5 reporter Matt DeLucia asked Ellen Szymanski if in all that time she ever thought this could happen to her husband. Ellen Szymanski replied: "No. It was so rare. It's weird to be that rare. If you read about it, it's like nobody gets this."
40 years ago, this diagnosis was almost certainly a death sentence. Now, while there is still no cure, there is treatment.
"We try to give them hope. We try to get them as comfortable as we can," said Dr. David Ginsburg, a neurologist and associate professor at the University of Nevada School of Medicine.
Once a month, Ginsburg and a fellow doctor take part in a clinic designed to help the 430 families in southern Nevada who are suffering from more than 40 different types of muscular disease.
"Whatever various issues that they're having with their disease, we try to address each issue one at a time," Ginsburg said.
Conditions like ALS, better known as Lou Gehrig's Disease, are still the most devastating, and it is the reason why research for a cure is a constant mission.
"That's why were here - to provide hope for these families," said Rachel Commeford, executive director at the Muscular Dystrophy Association of Southern Nevada.
The MDA raises money for the research, but the organization notes there is still more work to be done.
Commeford is certain there is a severe lack of awareness to muscular ailments in the region.
"Oh, certainly," she said. "Because there's 430 family members here in Las Vegas - and what - I think in Clark County we have two million residents? I mean, it seems like a very small number."
One of the organization's fundraisers hits home for Tim Szymanski. It's the annual Fill-the-Boot drive, a firefighter-led drive with roots in Las Vegas. Though it is still debated to this day if the drive originally started in Las Vegas or Boston.
In another twist of fate, the two firefighters who launched the Las Vegas drive in the 1950s would later be diagnosed with muscular dystrophy and die as a result.
"Since these two guys succumbed to the disease, and they started it here, it's almost like you have to pick up the torch and keep going – like, don't let me down," Tim Szymanski said.
Both Tim and Ellen Szymanski have always believed that everything happens for a reason. In this case, it's a process that began with Ellen's assignment - four decades ago.
"It really makes you think, why do you do things?" Ellen Szymanski wondered. "Like, who gave me this information? Did God tell me to write this story, so when it happened I wasn't panicking?"
"I laid in bed at night and thought, 'What did I do wrong?'" Tim Szymanski said. "And, it was almost like, ‘I don't know if I've got a future any longer. Am I going to be dead in a couple of years?'"
Tim Szymanski is now receiving treatments once a month, which are not cheap. Some treatments can cost thousands of dollars.
If he stops treatment, the disease would likely spread - eventually to his lungs, and stop his breathing.
Tim Szymanski is determined not to let that happen.
"I'm going to beat this thing," he proclaimed. "It's just an inconvenience in life right now, and if I do the treatments and do exactly what the doctor tells me to do, I'm going to make it to 100 like I've always planned. So I'm not going to let it get me down."
One of the most potent effects of MG is that it depletes one's strength and energy.
Tim Szymanski can no longer work 22-hour shifts and, without a pill every eight hours, he'll have trouble opening his eye again.
Dr. Ginsburg pointed out that some muscular diseases are hereditary, while others can surface without warning, and at any age.
The firefighters' boot drive for the MDA happens again in Las Vegas March 22 through April 7.
Copyright 2013 KVVU (KVVU Broadcasting Corporation). All rights reserved.
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