Jennifer went from not being able to walk or feed herself to dancing at her wedding and playing hockey with her nieces. Her miraculous recovery, due to a highly risky stem cell therapy, made national headlines. But she warns her fellow patients to be careful what they read online, and to beware of hype.
“In February 2001, my neurologist mentioned an experimental stem cell transplant as a possible treatment for my multiple sclerosis. So, I went for an MRI to see if I qualified for the study and when I came back to see him he said, ‘You are not sick enough.’”
I said, ‘What do you mean I am not sick enough? I can’t walk. I am off work on disability. My partner is bathing me, dressing me. What do you mean I am not sick enough?’
“He told me I didn’t have enough lesions on my brain to be eligible for the study. I was very disheartened because none of the conventional therapies were working for me. I went back in November and had another MRI. He took out his little red pen and started circling all the new lesions on my brain. He turned me and said, ‘You are sick enough now.’”
“We started to sign all of the consent forms. We were going through a long consent form and every other paragraph said, ‘This could lead to your death.’ ‘This medication causes seizures.’ ‘Inserting this tube could puncture your lung and you could die.’ ‘This chemotherapy is derived from rabbits and could cause all your organs to shut down.’ ‘Do you want to sign up?!’ {Laughter} So, we knew the risks going into the study.”
“I had to take chemotherapy to suppress my body’s response to the foreign stem cells. I didn’t feel I had a choice. I was 27, pretty much bedridden. It wasn’t a life. None of the usual therapies were working. It was my last shot to try and control my disease. I felt that if I didn’t take part in this trial and it was proven to stop the disease, and I was getting worse, I would be kicking myself.”
“There were many setbacks during the year and a half after the transplant, because the chemotherapy reduced my immune response. I had a blood infection, shingles and more. But I was able to get married, walk down the aisle with my dad and dance with my husband. Aaron and I started dating in June of 1996. I was diagnosed in July of 1996. I said, ‘There’s the door.’ But he stood by my side.”
“It was probably two years post transplant when I noticed the biggest change in how I was feeling.”
One day, I realized I could walk to my mailbox and back without using canes, I could go for groceries and not be exhausted. I didn’t need to take any MS medications.
“About three years after the transplant, I walked into my doctor’s office and he said, ‘Jen, you’re wearing high heels!’ He was as surprised as me at my progress because this wasn’t supposed to happen. The hope was only to stop the MS from progressing, but we were seeing improvement and regeneration of my nervous system. It seemed incredible.”
“I have passed my 14th year post-transplant and I have been able to take part in many amazing experiences. I can play laneway hockey with my nieces, take them to music lessons, hockey games and dance lessons. I can have them for sleepovers and play with them in the park. I go downhill skiing, swimming, kayaking at the cottage and do yoga. I also returned to work on a full time basis, passed my driving test and got my license back. I have regained control of my life.”
“I like to share my story with people who have MS to let them know that research is being done. To give them hope. To let them know that stuff is coming down the pipelines. And that when they fund charities, their money is not all going to administrative costs — it’s being put toward good use.”
“I speak to high school students who are interested in medicine as a career. People think going into medicine simply means being a physician, but research is an option too. Also, I like to give a patient’s face to researchers who are in the lab all day; they don’t necessarily get to see their research make it to the bed side.”
“I speak at fundraising events. One woman gave $5 million for MS research to my hospital. She told me that she had some money to donate, but she wasn’t sure where she wanted to donate. Then she heard my story, about the struggles that I went through with being diagnosed at such a young age and giving up my dream of joining the RCMP, about how my husband stayed by my side and I walked down the aisle and danced at my wedding. I was amazed that my story could move someone to donate that much money. That was so generous.”
“What are your thoughts about the initial excitement of many people with MS about the Zamboni procedure?”
“So many people believed it was a cure because of all the misleading information out there. It is unfortunate that there was so much hype around the treatment.”
“I think the evidence has made a difference, so I’m glad that the MS society funding went to the Zamboni studies. It has shown MS patients not to spend their time and money to go overseas. It isn’t an effective treatment at all. Unfortunately, a lot of people have been hurt.”
“I hope that a lot of the MS patients will not be swayed by the two-line media headlines. Reporters need to dig a bit before they produce sensational stories; they need to look at all the facts.”
The internet has a lot of great stuff. But that’s not the first place you want to go when you are first diagnosed.
“You’ll see all the possible symptoms at once – loss of vision, paralysis, and so on. Oh my God, you will scare yourself, you will make yourself sick. But not everyone will progress at the same rate and not everyone will experience the severe symptoms.”
“For MS, the internet has been helpful because there’s been so many new medications coming out. I mean, there were two medications when I was first diagnosed; now, I think there’s 15 or 16. Your physician can tell you about some drugs to think about and then you can go home and go on a discussion board with other patients, see what they have to say, how it has worked for them, maybe some side effects, what made them feel better.”
“I suggest to my fellow patients that they use the internet as a decision aid and then go back to their physicians and say, ‘Okay, I had some time to do some research.’ But definitely, the internet shouldn’t be your only tool.”
The comments section is closed.