MS relief sought in Costa Rica

News

Posted By JENNIFER BURDEN, THE PACKET AND TIMES

Posted 1 month ago

On Sunday, 24-year-old Lilly Cadeau will be boarding a plane bound for Costa Rica.

For most people her age, the Central American country holds promise of an exciting backpacking trip, or a pleasant, relaxing vacation on one of its many sandy beaches. But for Cadeau, Costa Rica hold promise of a cure, or at least some form of relief from a debilitating disease.

"I never got better," she said Thursday. "You have to learn to cope with what you can and can't do. There is so much that I can't do that I used to. I used to be a sports freak."

The girl who once played for the Ontario Volleyball Association on top of soccer, basketball, badminton and track and field, now has difficulty cutting food, getting dressed, going shopping or typing on the computer.

"The morning is when I feel the best. I can't run a marathon or anything, but I feel the best in the morning," she said.

Cadeau, like many other Canadians with MS, is forking out almost $20,000 to fly to San Jose, Costa Rica, to receive the controversial chronic cerebrospinal venous insufficiency treatment (CCSVI), also known as the liberation therapy.

The balloon angioplasty procedure is believed to help people suffering from MS. The liberation therapy has been catapulted to the forefront of medical and political news ever since Italian doctor Paolo Zamboni published results from his study, which classifies MS as a vascular disorder caused by vein blockages that lead to a build-up of iron in the brain, rather than an autoimmune disease. Zamboni reportedly improved the condition of 65 patients by opening their constricted veins.

The treatment is still considered an unproved theory and is not available for patients with MS in Canada.

But on Tuesday, Saskatchewan premier Brad Wall announced that Saskatchewan is willing to finance clinical trials. His decision puts Saskatchewan, the province with the highest rate of MS in Canada, at the forefront of the highly politicized debate between researchers, politicians and the MS community.

Simcoe North MPP Garfield Dunlop applauded Wall for his stance on the issue and is urging Premier Dalton McGuinty to follow his lead.

"That's the courage politicians need these days," Dunlop said Thursday. "I don't know how we can sit back as politicians and not do something. I can't help but think we should be moving forward on this."

When Cadeau first heard of the liberation therapy in May, she was shocked to learn the treatment wouldn't be offered in Canada.

"I thought it was going to be available here. You would think that if it works for some people, then they'd at least make it available. It doesn't make any sense," she said.

Cadeau said the hardest part about having MS is trying explain to other people the pain and suffering she endures every day. Now, with the hope of getting some relief, she is half excited and half terrified it won't work.

She has tried multiple treatment therapies before, including drug modifying therapies, where she had to inject herself daily with medication, and chemotherapy to help rebuild her cells and stop the disease's progression.

Neither worked.

All that happened was she began to lose her hair, which is now cut short and very thin.

Cadeau did manage to finish college throughout her ordeal. She graduated from Georgian College's three-year environmental technician program, but now can't find a job in her field because it involves physical work.

"I just want to be able to do what everyone else is able to do. I want to get a job and pay off my loans," she said, adding that she has a $30,000 student debt with no way to pay it off.

But she said money was never a deciding factor when she received a call earlier this week from the hospital in Costa Rica saying they had a cancellation for their Aug. 3 procedure.

Her aunt will help her with the cost of the flight and treatment upfront, she said, but the money will eventually come out of her own pocket.

Cadeau is optimistic about the procedure and is just hoping for some form of improvement. Results from an ultrasound she received earlier this year with vascular surgeon Dr. Sandy McDonald in Barrie, showed she had four blocked veins out of a possible five.

"If I had better circulation, my pain would probably go away, my balance might be better," she said. "I'm just hoping for any improvement. That would be nice. I'm just hoping for the best. I'm so young. I do have my whole life ahead of me."

Members of the public interested in helping Cadeau with the $20,000 cost surrounding the treatment can contact her at lillycadeau@hotmail.com.

jburden@hotmail.com

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