People with multiple sclerosis and their supporters rallied in cities across Canada on Wednesday, pressing for more funding and research for an unproven treatment for the disease.
The activists, many of whom were in wheelchairs, want researchers to speed up work on the theory that narrowed neck veins cause blood-borne iron deposits to build up and damage brain cells, and that unblocking the veins will help people with MS.
The notion that chronic cerebrospinal venous insufficiency — or CCSVI, as it’s called — causes or contributes to MS has been put forward by an Italian doctor, Paolo Zamboni. But many neurologists and others in the medical community are cautious and say that much more study is needed to see if it even plays a role in the disease.
About 50 people attended a rally in Toronto outside the Ontario legislature. Among them was Daphne Mansfield, of Brampton, whose her husband suffers from MS. “What brings me here today is my husband, Luciano Vascotto. He’s had MS for 20 years and we have been trying all different things to see if we can get him walking again,” she said.
“His left side is gone completely, so we’re hoping one day he’ll be able to have this surgery they are saying could help to unclog the veins, and hopefully he’ll be able to have some use of his left side again.”
In Halifax, about 30 people gathered at the legislature to call on the Nova Scotia government to approve the procedure and provide funding for those seeking testing and treatment.
Christopher Alkenbrack, a 42-year-old former teacher from Wolfville, N.S., said governments should start offering help now, even though the treatment is still in the experimental stage.
“I’m not in a wheelchair yet, but I could be soon if I don’t get this procedure done,” he said, leaning heavily on a pair of crutches. “They need to act immediately.” Alkenbrack, who was diagnosed when he was 24, said he was forced to quit his job as a principal in Quebec six years ago and his health is in decline. He recently cashed in his RRSPs and is planning to travel to Poland on May 15, where he will receive the treatment. He expects the trip will cost him $15,000.