A recent announcement that the province will be embarking on a multiple sclerosis ‘observational study’ is good news for those battling the disease.
MS has been in the news quite a bit over the past several months, primarily because of a controversial treatment where patients undergo surgery for blocked or narrowed veins. The procedure was introduced by Paolo Zamboni, a vascular surgeon who believes that MS is not an auto-immune condition but a vascular disease.
The Zamboni treatment, which is not approved for use in Canada, is being offered in other countries. Many who have undergone the surgery say they have noticed positive and significant differences in how they feel afterwards.
What needs to be done from this point forward is that experts need to focus more closely on not just Zamboni’s theory but on how those who have had it fare in the months and years ahead.
What exactly is the long-range story?
To that end, residents with MS are being asked to take part in a study to track their experiences. The study will also focus on those who have had the Zamboni treatment or other similar procedures.
For many reasons, it’s critical that MS research in general receive more attention.
It’s the most common neurological disease of young adults in Canada.
Symptoms include vision disturbances, extreme fatigue, coordination problems, pain, depression, bladder and bowel problems and short-term memory loss.
Canadians also have one of the highest rates of MS in the world, according to the MS Society. Most of us know someone with MS, and know only too well the devastating effects it can have.
Ultimately, in situations where opinions over a medical treatment run the gamut from solid support to outright rejection, governments are often very reluctant to get involved in any meaningful way.
That’s why the province should be congratulated for the observational study. They aim to take everything into account – the positive experiences from the Zamboni treatment to the stories of those who felt nothing afterwards – or perhaps felt worse.
A recent release says the government wants to hear about it all, so decisions can be made about follow-up care “for those who have received the treatment abroad. It will also help determine safety and will support the design of effective clinical trials.”
The Alberta Multiple Sclerosis Initiative (TAMSI) study will include an online survey at www.tamsi.ca that patients with MS or related conditions, once registered, will fill out at six, 12, 18 and 24-month intervals.
This is a timely and vital course of action. Every day, three more people in Canada are diagnosed with MS, and women are more than three times as likely to develop MS as men. Clearly, statistics like these demand a much greater emphasis on finding answers.