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Most people have never heard of the Charcot-Marie-Tooth disease
That includes those in the medical profession
“There are a lot of doctors who don’t even know what it is,” said Doreen Pomykala, of New Lenox. “There are also neurologists, who should know, learn about it one day in med school but they don’t know much about it.”
Officials from the CMT Association say it is an inheritable, progressive neuromuscular disease that affects more than 135,000 people in the United States, including an estimated 2,900 in the Chicago area and 5,100 across Illinois
It can cause muscle weakness, impaired balance, difficulty walking and nerve degeneration
Here is the kicker
Because it affects people at different stages of their lives, even those who have had the disease all of their lives have never heard of CMT until they are diagnosed
Some go years before receiving an accurate diagnosis or proper medical care
“I never heard of it until I was 36 and I’m 48 now,” said Joe Ruzich, of Wheaton. “I’ve had it my whole life but it hit me over night. Some children have the muscle problems right from the start.”
A group of more than 70 people participated Saturday in a Walk 4 CMT at the Hickory Creek Preserve in Mokena. Participants walked a half mile, which doesn’t sound like much for some, but for those with CMT it provided a challenge
There were raffles and food at the event, held for the fourth time in Mokena. Pomykala, the organizer, was crossing her fingers it will generate more than $10,000
Making money and raising awareness were major parts of putting on the walk. But also important was the gathering of those suffering from CMT and swapping stories
“It’s to get us people with CMT together,” Pomykala said. “It seems like every year, we get someone new in the group who says ‘I’ve never seen another person with CMT in my life.’
“This is a wonderful opportunity to see other people who walk funny, whose hands don’t work well. That’s a big part of why we do this.”
The walks have been held for decades in the Chicago area, but in the last two years, Deb Havighorst, of Homewood, has come on strong with the group, bringing 25 walkers to Mokena to support her and the cause. She has a team called Deb’s Sole Sisters and Misters for CMT and it raised more than $3,000
Havighorst, an executive director of institutional advancement at Prairie State College, was diagnosed with a form of CMT 2 1/2 years ago called heredity neuropathy with liability to pressure palsies
“This is a progressive disease,” said Havighorst, 59. “I could get worse or I could stay exactly how I am the rest of my life. There is no way to really know
“You just take what comes.”
She said she didn’t know about the disease before the diagnosis. She said she was uncoordinated as a child and loved sports but couldn’t play them. Havighorst worked a year in marketing with the NBA’s Miami Heat
Even though canes and leg braces are a part of her life, she tries to maintain a positive attitude and enjoys being at events such as the walk
“It’s a great way to be with friends and family and to support this,” she said. “The more you talk about it and more the word gets out, hopefully more research will be able to be funded.”
Ruzich is a former newspaper reporter who now sells stones and fossils at Affordable Antiques and More in Naperville. He said when he was young, he was “clumsy” but things didn’t get bad until he hit his 30s
“For the most part, it affects the feet and the hands,” he said. “But it can also affect breathing and other muscles that are in the body.”
He said some people with CMT have intense surgeries. Ruzich, who uses a motorized scooter when he goes to walking events, said the hard part is that the disease generally gets worse
“Last year, I would walk around the house using a cane,” he said. “Now I have to use a walker. I wonder what’s going to happen in 10 years from now. It’s really scary.”
Jeff Vorva is a freelance reporter for the Daily Southtown
