Thursday January 18th 2018

Glace Bay woman determined to conquer debilitating illness

For Edna Lee, hope came in the form of a fax confirming she was suffering from a serious medical condition.

The 55-year-old Glace Bay woman has been living with multiple sclerosis, an autoimmune disease that affects the brain and spinal cord, since she was 22. Recently, she learned about a condition called CCSVI (chronic cerebrospinal venous insufficiency), a condition of vein blockage in the neck or chest that hampers the flow of blood to the brain.

Since lack of blood flow is believed to be the cause of many of the problems associated with MS, Lee wondered if CCSVI might be behind some of her own symptoms.

People with MS can experience up to 20 different symptoms, each of which can vary in severity. Over the years, Lee’s own symptoms have included muscle weakness, loss of balance and feeling, fatigue and pain. Most recently, she underwent physiotherapy after an episode before Easter left her with severe weakness in one of her legs.

In May, Lee travelled at her own expense to a clinic in Barrie, Ont., where a test was done to determine if she had CCSVI. As luck would have it, when she arrived home to wait for the results to arrive by mail, Canada Post was in the midst of a strike. Undaunted, she set up a fax machine in her own home and settled in for a seven-day wait.

“I was on pins and needles when the fax finally came through,” she recalls. “I started to cry when I saw the results. They gave me hope.”

That hope is tempered by the fact that the treatment for CCSVI — an operation involving angioplasty to open up veins in the neck and chest to increase the flow of blood to the brain — isn’t being done in Canada. To receive the treatment, called liberation therapy, Lee learned that she would have to travel to the United States for treatment that would cost about $15,000, which she says she can’t afford.

Canadian MS patients, estimated to number between 55,000 and 75,000, who clamoured for CCSVI testing and treatment were told it was not a recognized disease in Canada. Many neurologists — along with the Multiple Sclerosis Society of Canada — expressed concern that the procedure was unproven and risky.

“The treatment is being done on a routine basis in other parts of the world,” says Lee. “It provides hope for people like me — the first real hope for me in 27 years.”

In June, the federal government committed to clinical trials into liberation therapy. A request for proposals is expected to be issued by the end of the year, with trials set up by next year.

Dr. Kirsty Duncan, Liberal MP for Etobicoke North, has put together a petition that requests that legislation be introduced to have CCSVI recognized as a vascular illness under the Canada Health Act and to ensure that testing and treatment be made available to Canadians.

For her part, Lee is emailing copies of the petition to everyone she knows.

“The petition is very important to me personally, but it is critically important to all those who suffer from CCSVI,” she says.

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