A Cochrane resident is asking the public to help her seek treatment for secondary progressive multiple sclerosis (MS).
A Cochrane resident is asking the public to help her seek treatment for secondary progressive multiple sclerosis (MS).
Shelly Irmen, 44, was diagnosed with the disease in 2003 and because of the advancing nature of the disease has made the decision to receive fetal stem cell treatment at the Stem Cell of America centre in Mexico.
“It hasn't always been this way, it wasn't always progressive - until a year and a half ago I had what's called relapsing remitting multiple sclerosis. That is when a person has a flare up/new symptoms followed by a period of remission, ” Irmen explained.
Irmen has started a GoFundMe page online to help fundraise for her treatment as well as associated costs such as airfare, hotels, and food. Her treatment date is Aug. 20 and she has currently raised $4,300 of her $35,000 goal.
The symptoms of MS are different for each person. In Irmen's case, her disease causes her severe tremors, extreme fatigue, memory loss, and confusion.
“I've been told by the MS clinic in Calgary and my physiatrist that this is the worst tremor they have ever seen. I've been given medication to try to treat the tremor but my neurologist and physiatrist told me that tremors are the hardest symptom to treat, ” Irmen said.
Since her diagnosis, Irmen has watched the life she previously led change drastically.
“At some point things started slipping away from me. I was working as a registered massage therapist and went on long-term disability right away, ” Irmen explained.
Irmen said her disease started forcing her to give up activities, such as skiing because it felt as though her upper body and lower body weren't connected. She tried to adjust to her new circumstances by teaching hot yoga but soon gave that up because extreme temperatures bothered her.
Irmen is the mother of two children, one seven-year-old daughter and one 10-year-old son, and says they are the centre of her life. Her disease has most drastically affected the level of involvement Irmen has in her children's lives - Irmen would love to be their caretaker full-time but is currently unable to.
“My kids are my life, however, I can't even take care of myself. I get exhausted so quickly and they're young and want to be busy and it's very difficult for me to be busy with them. They live with their father and the challenges that I'm faced with is I can take them maybe one to two nights a week, and sometimes in the summer it's maybe one child each time, ” Irmen explained.
Currently, she relies on caretakers who alternate making home visits every day twice a day. Their responsibilities involve preparing meals and feeding her. Irmen's tremor prevents her from performing those tasks.
“I can't hold a spoon without jabbing my own eye, jabbing my helper's eye, or the food going everywhere, ” Irmen said with a laugh while explaining the intensity of her tremor.
After researching treatments in Canada, Irmen was shocked and disappointed to find there are a limited number of options available.
Irmen explained she came across an article about an experimental trial in Ottawa where doctors had reversed the effects of MS in a patient using adult stem cell treatment and chemotherapy. The Ottawa Hospital Research Institute stated, “This method completely eliminates the body's defective immune system and replaces it with a new, healthy one derived from the body's own bone marrow-derived hematopoietic stem cells. ”
While Irmen could apply for the trial, she may not be eligible for that treatment. She also does not want to undergo chemotherapy and non-chemotherapy treatments are not currently available for patients with progressive MS.
The Ottawa Hospital Research Institute also explains those who participate in the trial must move close to Ottawa, meaning Irmen would have to move away from her children in order to participate.
“Currently, that I am aware of, there is no stem cell therapy for my condition in Canada except for receiving chemotherapy. I don't want death from the treatment to be the other option as opposed to living with the disease, ” Irmen explained.
Irmen then expanded her search to treatment options in North America.
“I found in the United States, the places I looked into use your own stem cells. It involves a mini liposuction surgery and they then separate the stem cells from the rest of the tissue that gets taken out. The stem cells are adult, not new, and they get put back into you… The cells are old and already have markers that determine what they're going to be, ” Irmen said.
Her search eventually led her to the Stem Cell of America centre, which specializes in fetal stem cell treatment, and claims it can repair her central nervous system.
“A lot of the research I found indicated that fetal stem cell treatment is very different than any other type of stem cell treatment. The cells are blank because they haven't been identified as what they're supposed to be yet, they don't have markers, ” Irmen said.
According to Stem Cell of America, fetal stem cells are the cellular building blocks of the 220 cell types within the body. The fetal stem cells used by Stem Cell Of America remain in an undifferentiated state and therefore are capable of becoming any tissue, organ or cell type within the body.
“Fetal stem cells also release cytokines - cell-derived, hormone-like polypeptides that regulate cellular replication, differentiation, and activation. Cytokines can bring normal cells and tissues to a higher level of function, allowing the body's own healing mechanisms to partner with the transplanted fetal stem cells for repair and new growth, ” states the centre's website.
Irmen wanted to emphasize that her accessing this particular treatment is neither pro nor anti-abortion, she is simply trying to improve the quality of her life and her children's.
“The stem cells come from babies in Eastern Europe that people have chosen to abort and donate to science to help a life … It's not my business to say if you should or shouldn't do something - it's an entirely different subject, ” Irmen said.
Irmen realizes this treatment isn't necessarily a cure for her disease and will be going into her treatment with an open mind.
“I just want to be independent again and to be able to feed myself. I just have to stay positive, it could take three to six months for me to see results. My desire is to see my tremor subside enough for me to be independent and to not need government financial help to hire people, ” Irmen said.
“It's the only thing I can do right now, there's no other option. So I have to try, because I'm just getting worse, ” Irmen continued.
According to the MS Society of Canada, MS is currently classified as an autoimmune disease of the central nervous system. The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin.
For more information about Shelly Irmen and to donate to her cause, visit gofundme.com/29jfhnur.
