PUBLIC servant Irene Elliott is preparing to take on a high-risk treatment for multiple sclerosis that involves being blasted with chemotherapy to destroy her immune system – but that may just provide the closest thing to a cure for her rapidly progressing disease.
“I’m calling it a cure, because I truly believe this will help me,” says the bright 35-year-old.
“My options have pretty much run out. My MS is what it is, and it will get worse, so I had to be proactive.”
Irene’s research revealed a treatment called hematopoietic stem cell transplantation (HSCT), which involves harvesting stem cells from the patient’s bone marrow, then decimating the immune system with chemo before reintroducing the stem cells.
“I know the scarring in my brain may not reverse, but if this procedure can just halt the progression, that would be incredible,” she says. “I just don’t want to get any worse.”
Irene’s family are hosting a “Big Fat Greek Fundraiser” at the Hellenic Club in November to raise the $90,000 needed for her treatment, which will involve foreign travel to a clinical centre in either India, Russia, Germany or Israel, plus a significant period of rehabilitation.
“The treatment has been established overseas for years, but it’s not available in Australia yet – it may be one day, but I can’t wait that long,” she says.
Lee Davelaar, national communications manager at MS Australia, says he’d recommend that anyone interested in the treatment discuss it with their treating Australian doctors very carefully before pursuing it further.
“If Irene has already explored this fully, we hope that the treatment provides her with some relief from her symptoms,” he says.
Irene now has severe progressive-relapsing MS and is clearly in pain, but smiles and laughs readily and tells “CityNews” she’s learned to manage it.
“I try to hide the pain as much as I can,” she says. “I can’t go on about it, no one needs to hear that, so I just get on with things.
“It feels like my feet are on fire a lot of the time. I can’t wear heels, I’d just topple over. It’s a challenge to walk anyway and I do trip a lot.”
Irene says walking can be so difficult and painful she has to get into a strong mindset to do it.
“I’m like, ‘just put one foot in front of the other, just get there’,” she says. “I often ignore people without meaning to, because I’m concentrating so hard. And I tell myself I can’t fall because these are my last stockings and I’ve got a meeting later!”
Irene’s positivity and determination are a credit to her “lovely husband and big fat Greek family”, she says.
“It takes a collective to keep you up,” she says. “When you’re ill you become like a recluse, you don’t want anyone to see you like that. But my family is just amazing, like my cousin Eleni would come and sit with me while I had steroid treatments. The people around me keep my spirits up.”
Irene was diagnosed with MS, an autoimmune disease of the central nervous system affecting the brain, spinal cord and optic nerve, when she was 24, although she thinks it probably started earlier.
“I had some symptoms from 19, but I ignored it at first – you’re invincible, right?” she says.
“But when I was 24 I experienced numbness and paralysis from my neck down to my chest.
“I went to a physio because I thought I’d overdone it at the gym. My back was sore but so was my whole body, which was very confronting. It was relentless, rotten pain, and it became like torture.”
Even after her diagnosis. Irene says she was in denial. “I felt well for a long time after, but then it started to hit and it all became real,” she says.
Irene says that over the years she’s tried everything, from “hippy” bee-sting therapy, various drugs and changing her diet, but her MS has now progressed so far that she has run out of options.
“I have so many scars in my brain and spine, and there’s no way of knowing where the MS is attacking me,” she says. “Mostly I feel like I’m losing control of everything. It’s like being drunk – I walk like I’m drunk, I slur my words. I go to pick up my cup of coffee and I’ll pick up the wrong thing. It’s a constant battle and I’m exhausted.
“The fatigue is hard to manage and it’s easy to overexert myself. I can’t find the right words and sometimes it’s hard to think. It affects my cognitive abilities and short-term memory.”
Working full-time as an ICT services manager for the Department of Defence, Irene says she loves her job and she does as much as she can. And at home, she enjoys cooking for her husband of 17 years.
“I want to do what a wife does, and look after him,” she says. “But the MS doesn’t just affect me, it affects the whole family. We’d love to have kids, but it’s too risky for me.”
Irene says she is in awe of what her family is doing for her.
“They’ve seen me suffering – as much as I try to mask it, they’re not stupid, they can see,” she says. “They’ve already supported me so much. Five years ago I could barely walk and I became quite depressed. I have good days and bad days, but they see my determination to live a normal life.”
“I’m choosing to be positive,” says Irene. “I will never become this disease, and it’s a downward spiral to think that way. Especially when there is hope.
“I’m aware of what I’m going into, but I’m positive about it, because it’s my only chance at getting my life back.”
Lee Davelaar, from MS Australia, says it’s only natural that someone with such an aggressive form of MS would explore all the possible treatment methods available.
“Whilst there have been some encouraging results from stem cell procedures in Europe and North America, it is still considered very much an experimental treatment,” he says.
“Ultimately, further clinical trials are required to confirm the safety and the expected benefits of the procedure for individual patients.”
The “Big Fat Greek Fundraiser”, the Hellenic Club, Woden, Friday, November 1. Tickets at $90 are available from the club’s reception or by emailing firstname.lastname@example.org.