Niagara woman looks to Russia for multiple sclerosis treatment
More than $100,000 already spent on treatment of debiltating disease
Her passport would make a world traveller jealous. Deanna Kertesz Fournier has visited Israel, Greece and California. Next on her agenda is a trip to Russia in August. But while she may have an enviable travel history, it’s for an unenviable reason. “I’ve never experienced where I visit,” the 44-year-old said. “I go from the airport right to the hospital.” The Niagara woman has lived with multiple sclerosis for more than 12 years. Multiple sclerosis is a chronic inflammatory disorder of the central nervous system. Canada has the highest rate of MS in the world, according to the MS Society of Canada, with an estimated one in 340 Canadians living with the disease. There is no cure. It can cause symptoms such as extreme fatigue, weakness, vision problems, bladder problems and cognitive impairment. The Niagara woman was diagnosed with the disease in 2006 after her partner Geoffrey Hadfield mentioned to her one day her gait seemed “off.” “I was walking and I would veer off in direction other than the one we were going,” she recalled. She made an appointment with her family physician who ordered an MRI. “I showed up at the doctor’s office for the results and was told I have lesions. I had multiple sclerosis, primary progressive, and I had no idea what that was.” That diagnosis has led to a series of risky, often painful, and increasingly expensive treat-
ments that are not available in Canada. “At first I had to give myself these series of shots and they did nothing. Then the doctor prescribed anti-depressants and told me to do things like yoga.” Her condition, however, worsened and she had to use a cane to get around. In 2009, the couple travelled to Israel where Fournier underwent a bone marrow transplant followed by a stem cell infusion in Greece. “I was able to walk unassisted,” she said with a smile. “I felt normal again.” That feeling of euphoria, however, soon faded. Her symptoms returned nine months later. She went from a walking with a cane, to using a walker. She is now confined to a wheelchair. Undaunted, Fournier continued to search for new treatments, new therapies, new options, that she hoped would give her a “chance to escape this miserable existence.” In 2011, she went to California and underwent an angioplasty procedure called CCSVI. The treatment was not successful. The couple estimates they’ve spent upwards of $100,000 in their quest to find relief from the debilitating disease. Fournier is now pinning her hopes on a hematopoietic stem cell transplantation treatment in Russia. The procedure involves the harvesting of stem cells followed by high doses of chemotherapy before the cells are returned to the body. According to the A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre, the majority of HSCT patients report significant improvement in their quality of life after transplantation. The treatment also shows promise in the treatment of other autoimmune diseases such as rheumatoid arthritis and Crohn’s disease. “It’s risky, yes, but I’m willing to take that risk,” Fournier said. “Hopefully, this will reduce my level of disability, if not halt the progression. I’m hoping for both.” Fournier will travel to a surgical centre in Moscow at the end of August to undergo the treatment, which costs about US$50,000. She’s been told to expect to be very ill following her return home. “She’ll be gravely ill,” Hadfield said. “It’s radical chemotherapy. The chemo is more powerful than if she had leukemia.” Fournier maintains the benefits will outweigh the risks. “I’m well past the scared stage,” she said. “I’m desperate. I just want my life back.” She recently launched a Go Fund Me campaign — https:// www.gofundme.com/ project-russia — to assist with the cost of the treatment and related expenses such as flights and visas.