The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long focus on MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, Sue-Anne Lecompte, a patient in the study, shares her story of MS.
Q: When were you first diagnosed with MS?
A: I was 38 when I was first diagnosed with MS. It was the spring of 2003 and I had been living a pretty active life — building a career, and a home and life with my husband.
My first attack started on a Friday and progressed for seven days with a vengeance until I could no longer walk, talk or use the left side of my body. This resulted in my first five-month stay in the hospital. It took another two or three such hits and a lumbar puncture to confirm the disease. Then I began a three-month stay at a rehabilitation centre to relearn how to walk, use my left hand and speak.
In the first months of 2004, my MS hit again and again. I became quite good at relearning each time what had been lost. Over and over this went on until I received the stem cell transplant in 2009.
While enduring this five-year carnival ride, I was treated with steroids, injectables and chemotherapy. None of these treatments seemed to stabilize or even modify the disease. It just kept hitting – different hues of the same type of stuff, with varying degrees of handicap.
Q: How did you find out about the Canadian MS Bone Marrow Research Study?
A: I found out about the study after watching a story on W-5 in 2004. I met with Dr. Atkins for a chemotherapy treatment in 2005, and Dr. Freedman that same year, to inquire about what I had seen. At that time, Dr. Freedman indicated that I would be using a wheel chair full-time within five years if the disease continued at the same rate. But luck had turned my way and I had the chance to hear about this research study from “the horse’s mouth.” Talk about two lucky appointments. I was accepted into the trial in 2008, five years after I had first been diagnosed.
Q: How did being a patient in the study affect your life?
A: It was my first experience as a patient in a research study, and the implications of this were huge. The study always came first. There were hospital visits, tests and an immense amount of recovery time. My husband turned into my chauffeur, my cook, my second set of ears, my sounding board. Luckily, we live in Ottawa so we didn’t have to move for the trial, but the study still took its toll, financially, time-wise and emotionally.
Q: How did you prepare to enter the study?
A: I informed friends and family that I would need support and understanding, and that this study was pretty dangerous. Given the chance of death, I prepared a will.
Physically, I stayed as healthy and fit as possible. I underwent many medical tests. But I was totally available because I had been dreaming about being healthy for a long time and I was willing to do anything to fulfill that dream.
Q: What were your expectations and fears going into the study?
A: I had neither fear nor expectation. The study was totally transparent and I thought it made perfect sense. Nothing in life is without chance and I was willing to take any chance to be healthy. Furthermore, I believed in the research and its conclusions. It was my chance to alter the course of this hateful disease.
Q: What kind of changes did you see in yourself after getting the stem cell transplant?
A: Directly after the treatment, I could wiggle my toes and walk 400 metres with three short rests. After three months, I could cook my own meals, bathe myself and walk 400 metres without stopping and with no leg brace or cane. Six months after the treatment, I could walk 800 metres without stopping and without support. I could put on my own earrings and chew gum, which I hadn’t done in seven years.
Q: What do you want people to take away from your story? What do you want them to know about stem cell science?
A: This treatment works. It’s not easy and you must commit wholeheartedly, but I want people to know that these scientists are on to something.
This past Easter, one year and three months post-transplant, I wore high heels for the first time in seven years. Who knows what lies ahead for me? I do know that I can now make plans for tomorrow!
Sue-Anne Lecompte is married to Gilles. She loves the outdoors, her pets and most of all life. She believes her stem cell transplant has allowed her to make plans for a new tomorrow.
This post is also available in: German