Ask people if they've ever heard of a disease called
tuberous sclerosis, and they'll probably look at you and think
you've mispronounced tuberculosis.
Tuberous Sclerosis Canada (TSC), an organization dedicated to raising awareness of the disease, says a child is born with the disorder every 20 minutes, and more than one million people suffer from it worldwide.
Yet it's a virtually unknown disorder. People who have it,
or who may be carriers may not know they have it.
Tuberous sclerosis is a genetic disorder that affects vital
organs  including the brain, skin, kidneys, eyes, heart
and lungs. The disease can cause mental retardation, seizures,
and a number of physical abnormalities. While some people can
lead normal, healthy lives, others are severely afflicted by
the disease.
Terry Treppis, 4, has been diagnosed with tuberous sclerosis
and has tubers growing in his brain and eyes that may one day
leave him blind.
"He's a normal little child . . . He lives his life like
anybody else," says Terry's mother, Suzanne, who is doing
everything she can to raise awareness of her son's disorder.
"It's nothing to be scared of," says Treppis. "It's just
like raising my other children, I just keep an eye on him and
watch for seizures.
"He's not sick, he's a normal four-year-old."
"He does have some difficulty," Treppis admits. "A normal
four-year-old could write his name, some could even write ABC,
but he has a hard time."
While there are surgical options available to remove the
tubers, Suzanne would rather not put her son under the knife
and hopes a cure can be found.
There is no funding or research going on in Canada.
"We have no government funding whatsoever," said Karen
Shulist, a TSC board member whose son Noah also has tuberous
sclerosis.
"We have invested money into research in the past . . .
unfortunately we end up having to send it to the United States.
"Ultimately we really don't care where a cure comes from . . . the United States has already started research in regards to different drugs.
Finding a cure would be great but right now it's about
finding the right drugs that can possibly shrink the tubers,"
she said.
How far off the radar is tuberous sclerosis?
"The Ministry of Health doesn't even have us on their
website as a link to our organizations' site, which is
disgusting," Shulist said.
A call to the communications officer at the Sudbury and
District Health Unit, who e-mailed  the query internally,
could provide no information on the disease.
"It's unfortunate that we're not recognized and I think
partly because there are too many conditions out there," said
Shulist.
Similar to other organizations clamouring for a spot in the
public eye, TSC is looking to take advantage of celebrity
appeal when they host a charity golf tournament June 3 in Ajax.
Canadian comedian Dave Foley and ET Canada reporter Rick
Campanelli are on board to help raise awareness.
For more information, contact Tuberous Sclerosis Canada, 45 Bolland Cres., Ajax, Ont., L1S 3G8 or phone (English) 1 800 347 0252; (French) 1 866 558 7278. The website is http://www.tscst.org .
