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Faced with a diagnosis of multiple sclerosis (MS) at age 23 and with her condition deteriorating, Geneviève Bétournay turned to a pioneering MS stem cell transplant at the Ottawa Hospital.
Publication date:
October 1, 2022 • 2 hours ago • Read 7 minutes Geneviève Bétournay received treatment for multiple sclerosis at the Ottawa Hospital. PHOTOS SUPPLIED
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When Geneviève Bétournay reflects on the last decade, she thinks about the adversities she has overcome. As the owner of the Art House, a cafe/art gallery, she has endured keeping her business alive during the pandemic. However, an even bigger challenge was her diagnosis of multiple sclerosis (MS) in 2010. Today, thanks to a life-changing stem cell transplant at The Ottawa Hospital, he has a whole new perspective on the possibilities that await him.
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Geneviève is no stranger to adapting to change. He was 20 years old and in college when he started having problems with his vision. Especially during stressful times, his vision would become blurry, but he didn’t associate it with anything more serious. That changed when I was 23 and living in Japan: new symptoms emerged. “I had more problems with my vision. It was getting worse and it was scary. In addition, my foot would fall, it would drag when I tried to move it and there were other problems related to movement,” recalls Geneviève.
The news about the multiple sclerosis diagnosis hits hard
When he returned home from Japan, he began searching for answers, but it was a while before someone connected the dots and discovered the problem. “Ultimately, it was the vision problems that ended up seeing me see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurry,” Geneviève explains.
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Geneviève’s neuro-ophthalmologist was the first to reveal the seriousness of what she was facing. Early indications suggested that her symptoms could be the result of a brain tumor or MS. “I remember that day sitting in the office. I got really emotional because I didn’t know what that meant to be honest. When you get older, in our society the way it is, chronic illness isn’t something you talk about so often.”
Finally, an MRI gave Geneviève answers. But along with those answers came the shock of an MS diagnosis.
MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation and balance. For Geneviève, there were so many unknowns and even more questions. “What is life with MS? What would life be like? It just sounded scary. I didn’t know what was going to happen to me,” she says.
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Innovative MS treatment pioneered in Ottawa
Once Geneviève and her family processed the news of her diagnosis, she learned all she could about the disease. A family friend, who happens to be a nurse, had heard a lot about Dr. Mark Freedman and his transformative research on MS stem cell transplants in collaboration with Dr. Harold Atkins and encouraged Geneviève to contact the MS Clinic at the Ottawa Hospital. Meeting Dr. Freedman was a pivotal day that would shed new light on her future. “I see it as one of those very lucky, life-changing moments when I made that call,” explains Geneviève.
Twenty-four years ago, many were skeptical when Drs. Atkins and Freedman first proposed the idea of using stem cells to reprogram the immune system to stop the progression of MS. Today, they are known for pioneering this innovative treatment that is now used in many countries around the world. In fact, it was chance that led Dr. Atkins, a hematologist, and Dr. Freedman, a neurologist, to meet while working on a different project. The two began discussing stem cell transplants and this would eventually lead to the transformation of MS treatment.
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Twenty-four years ago, Drs. Mark Freedman and Harold Atkins proposed the idea of using stem cells to reprogram the immune system to stop the progression of MS.
Although this was a time of uncertainty for Geneviève, she felt that she was in the right hands to handle the complexity of her case. “Dr. Freedman was very friendly from the start. It was very comforting to know that there were multiple treatment options if something didn’t work.”
Initially, Geneviève received the first line of treatment for a year which included injections every other day; however, it did not yield positive results. Next was a form of chemotherapy that targeted his immune cells. She stayed on this treatment for two years, but once again, the results didn’t have the impact her medical team had hoped for, so in January 2013, Dr. Freedman recommended a stem cell transplant. of MS.
MS symptoms progressed rapidly
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At this point, Geneviève’s MS was progressing rapidly. Both of his eyes were now affected and his mobility became increasingly impaired. “I felt numbness below the waist. It was very difficult for me to walk without help. I would need something to hold on to, whether it was a person or a wall or something. There were also problems with muscle spasms and dizziness” , explains Geneviève.
Headaches were also a challenge, and life was getting more difficult for this young woman who was doing her master’s degree at uOttawa. His degree was in organic chemistry and lab work was challenging due to blind spots in his vision and lack of skill. When it came time to decide whether to participate in the transplant, he explains, there was no decision to make. “I knew about this treatment from the beginning. It was always in the back of my mind. I had already processed it. I remember being sad that nothing else had worked and I had to do this or else my condition would continue to decline rapidly. I it gave hope but it was a very emotional day”, remembers Geneviève.
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He recalls the compassionate support he received from Dr. Freedman when the time came to consider the transplant. He explained that it would be one of the hardest decisions he had ever made and encouraged her to take the time to make sure it was right for her.
Geneviève learned that she could become infertile because of the procedure, so in the few months before the transplant, some of her eggs were harvested and she also received an injection that could allow her eggs to “hide” during treatment.
It’s time for an MS stem cell transplant
In July 2013, Geneviève received her stem cell transplant. The process begins with the purification and freezing of the patient’s stem cells which will then be “cleaned” in the laboratory. The next step is a strong chemotherapy treatment to destroy the patient’s immune system. The final step is transplanting the clean stem cells back into the patient; this is when a new immune system begins to develop.
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It is not an easy process, but Geneviève focused on what could give her the result. “Mentally and physically, it was challenging, but to be honest, I’m a different person today because I went through it.”
Geneviève says she was in the hospital for eight days before she could go home because she didn’t have a major infection or need constant monitoring. Also at that time, his cell count began to rise: his new immune system was beginning to grow. He returned to the hospital as an outpatient for several months.
Those moments when something happened that I couldn’t do before, are like pure euphoria. It was joy. It was gratitude for something you never thought you would ever feel again.
The next step was to determine the impact the transplant would have on his overall health. It took Geneviève eight to 12 months to recover, and then she began to notice small improvements. “That’s when I realized I could do something I couldn’t do before, or had lost the ability to do. The first thing I noticed was that I could lift my right leg, because my right side was more affected than the left”.
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When Geneviève saw these small improvements begin, she tried to temper her expectations. He didn’t want to let his hopes get too high, but he admits that sometimes he just couldn’t resist. “Those moments when something happened that I couldn’t do before, it was like pure euphoria. It was joy. It was gratitude for something I never thought I would ever feel again.”
Geneviève Betournay.
Was it all worth it?
Over the past decade, Geneviève has seen all symptoms improve. From lifting a single toe to moving one foot to being able to jump again, then walking several…