For most, dressing, walking up stars or making lunch don't require too much effort. For Halton resident Laura Lee to do those tasks however, she needs help.
In 1997, at age 11, Lee, now 25, was diagnosed with Charcot-Marie-Tooth Disease (CMT), a group of hereditary conditions marked by slowly progressive muscle weakness and atrophy (muscle wasting) in the feet, lower legs, hands and forearms.
Also called Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, CMT is a disorder under the umbrella of neuromuscular disorders, which includes Muscular Dystrophy (MD).
 |
Walk for Muscular Dystrophy at Coronation. GETTING GOING FOR MUSCULAR DYSTROPHY: Participants are expected to take part in the second annual Walk for Muscular Dystrophy Sunday at Coronation Park. Oakville Beaver file photo |
While CMT symptoms may not be highly visible, Lee has taken her role as Halton Ambassador for Muscular Dystrophy Canada to heart to create as much awareness as possible for the region’s second annual Walk for Muscular Dystrophy, happening this weekend in Oakville, through her network, social media channels and by word of mouth.
“It’s all about that education and awareness for people — that’s still a big barrier we have,” said Lee.
While one in every 2,500 people are affected by CMT, she said, the problem in diagnosing it is that it can look like other diseases, like Muscular Dystrophy, so getting the appropriate tests is very important.
Lee was diagnosed with Type 1A CMT, the disorder’s most common form.
Before being officially diagnosed, however, doctors originally thought she had Chronic Inflammatory Demyelinating Polyneuropathy, a rare nerve swelling disease that can eventually cause the complete loss of sensation in the body.
The symptoms of CMT are generally “nerve damage, muscle loss, (and) problems walking,” Lee says. “Our hands can curl up a bit because there’s not the nerve support to keep them straight anymore… I myself use a wheelchair, which is common, (and) I have leg braces to support whatever walking (ability) I still have.”
While the wheelchair is how Lee manages to get around for the most part, she says from the year she was diagnosed to 2002, no one would have be able to tell that she was suffering from the degenerative disorder.
“It was gradual, but sudden at the same time,” Lee said. “It was about 2002 (when) my disease started to progress. Prior to that if you had looked at me, you wouldn’t have known that I had any condition at all, unless you watched me run or go up stairs… (That year) I went from walking independently to (using) a cane and then a wheelchair in about six months.”
Lee was asked this year by Muscular Dystrophy Canada to be the Halton Ambassador for the walk.
“For me it’s about hope… diseases like mine and MD (they) kind of fall under the radar, but there’s no reason we need to lose hope because of that,” she said. “The type of illness we have isn’t in the forefront in the media or mainstream at all. So by having these events, you look at all the people that come out and they’re saying, ‘We’re here to give you strength. We’re here to give you hope and support, that you’re not alone.’”
Halton will be one of 54 communities participating in the national walk, taking place on Sunday, May 15 at Oakville’s Coronation Park located at 1425 Lakeshore Rd. W. Although this will be the second year Halton participates, it will be the fourth year the event has taken place nationally.
Those interested in participating in the one-kilometre or 5k walks can still register online or in person on the day — there is no registration fee.
Registration begins at 10 a.m., followed by the walk at 11 a.m. Some other activities and prize distribution will take place afterwards, as well.
Last year’s inaugural event saw 100 people in attendance and raised more than $10,000 for Muscular Dystrophy Canada — Lee says she hopes both numbers will be surpassed Sunday.
