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York Woman with MS Flying to Bulgaria in Search of Hope.

By Dave Stewart

The Guardian

Neva Tremere dreams of holding her grandchildren, she dreams of stopping the pain.

The York woman, who is in her 56th year, was diagnosed with multiple sclerosis and is heading to Bulgaria in search of hope.

There is a controversial procedure not available in Canada or covered by provincial health insurance policies and it's been making headlines across the country over the past few weeks.

Developed by Dr. Paolo Zamboni, an Italian researcher, it involves angioplasty to help ease the flow in beck veins of blood from the brain to the heart.

According to news reports, Zamboni believes narrowed or blocked veins force blood to move backwards or reflux back into the brain and spine, causing damage.

He's termed the condition chronic cerebrospinal venous insufficiency, or CCSVI.

More than 20 Canadians travelled to a clinic in Poland this past winter for the treatment.

Many MS specialists say the procedure is experimental at best and could be dangerous.

Tremere is willing to take that chance.

"Any type of improvement (would be great),'' Tremere said.

"I want it to stop, that's what this is supposed to do, foremost, is stop the progression and I certainly want that.''

It's going to cost Tremere close to USD 20,000 to fly to Bulgaria and have the procedure done.

Her family has organized a fundraiser for Friday, June 11, at the Charlottetown legion and the Metro Credit Unions are taking donations.

Kathy Doucette, Tremere's niece, says information indicates the procedure is 70 to 90 per cent effective.

"Their symptoms have been relieved and (some) get full function back,'' Doucette said.

"Right now (Neva) is having trouble trying to feed herself. A lot of these people are getting motor skills back that they lost due to MS.''

Tremere has to get to Bulgaria by June 13. Doucette said even the hope that her aunt will improve is something to look forward to.

"I think it is a miracle, it's just amazing.''

Tremere said she's going through a range of emotions in the leadup to surgery - nervousness mixed with excitement. One of her big concerns now is whether the hospital she's going to will have the equipment she uses at home.

"I have a lift at home that lifts me up and puts me to bed or into the shower. I don't know if they have that.''

Tremere said she felt fine until she hit 40. That's when the symptoms started showing up. She was diagnosed when she hit 45.

"My legs kept getting worse, spasms and pain and weakness,'' Tremere said.

"It's a miserable disease and it eventually catches up with you and takes away your dignity.''

Tremere said the procedure will be worth it, even if it only slows the progression for a year.

"You know what, I would take that year and go back to the way I am. I wouldn't want it to be over in a year but I'd take six months. If I could do (normal) things in six months, that's better than not at all.''

The Multiple Sclerosis Society of Canada has called on the federal government to provide USD 10 million for research into CCSVI and MS.
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Publication:Sofia News Agency
Date:Jun 8, 2010
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