Tuesday January 16th 2018

Don’t discount Zamboni, advocate says

Last May, St. John’s lawyer Michael Duffy required a cane to walk and a fistful of drugs to make it through the work day. By 5 p.m., he was exhausted.

Saturday, he rappelled down the side of Atlantic Place as part of an Easter Seals fundraiser.

A new international study bolstering genetic evidence that muscular sclerosis is rooted in an abnormal immune system has raised questions about the validity of the costly, and much debated, liberation procedure. But Duffy — an advocate and beneficiary of the treatment — said the public should not ignore the real impact it’s having on the lives of people like himself.

“I like to describe it as a very powerful treatment that helps an awful lot of people, and most who have the treatment benefit from it,” said Duffy, who underwent the procedure in Bulgaria last June.

“Is that a placebo? I don’t think so. The benefits are real, the sensory improvement is real, the strength improvement, balance and energy is real.”

The study, published in last week’s issue of the science journal Nature, found 29 new genetic variants common in MS sufferers, compared to those free of the disease, and confirmed 23 others previously linked to MS.

Many of those genes play an important role in the functionality of the immune system, with some implicated in other auto-immune disorders, including Crohn’s disease, Type 1 diabetes and rheumatoid arthritis.

Zita Kavanagh-Taylor, chairwoman of the St. John’s-Mount Pearl chapter of the Multiple Sclerosis Society of Canada, said the discovery is positive news and will likely lead to new studies on MS.

“Any progress is excellent,” said Kavanagh-Taylor, who was diagnosed herself two years ago.

Duffy said while all research into MS is important, he said it is disingenuous for people to use data from one study to unfairly debunk or discredit the liberation procedure.

“I’m very protective over it,” he said, being careful to stress that he applauds all studies on treating MS.

The procedure, based on a theory by Italian vascular specialist Dr. Paolo Zamboni, unblocks supposed obstructed neck veins to alleviate symptoms and potentially halt the progressive neurological disorder. It is not offered in Canada.

Zamboni’s theory believes narrowed neck veins — which he calls chronic cerebrospinal venous insufficiency, or CCSVI — are a likely cause of MS.

Immediate difference

Duffy, who was diagnosed with MS almost 20 years ago, said the procedure is painful, but only for a few seconds. He was kept immobile for 12 hours to reduce bleeding, and was discharged the following day.

“The next day, everything was clearer visually, I had more energy, and I was not as tired as I used to be.”

He still has periodic sensory deficits, but feels closer to being the person he was prior to being diagnosed with MS. Duffy no longer takes any medication.

“I can say that I have a new husband,” said Sherry Duffy. “He’s not falling asleep on the couch at 6 p.m. every evening. He has more energy than I do most days …. It’s pretty rough when a lot of household things that should be for couples were my responsibility, but now he’s back.”

A past leader of the local chapter of the MS society, Ted Warren, left his role with the group last fall over the national society’s opposition to starting clinical trails. However, Kavanagh-Taylor said the society is not giving up on research into CCSVI.

“Anything that shows any bit of hope, we’re not giving up on it,” she said.

Following the federal government’s announcement of funding for clinical trails on CCSVI in June, the Multiple Sclerosis Society of Canada released a statement applauding the move, calling the topic of CCSVI “an important one for the MS community.”

The provincial government has been involved in a study initiated last fall involving 40 participants, some of whom have had the liberation procedure and others who have not. It aims to determine the impact the treatment has, if any, on the physical and mental status of MS sufferers.

A spokeswoman for the Department of Health and Community Services said it expects to have preliminary results from the study in several months.

“At this point, it is too early to determine what role the results of this study will play, if any, in future decisions related to the treatment of MS patients in Newfoundland and Labrador.”

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