With her wavy red-gold hair and light scattering of freckles, Darcie Kelly looks younger than her 31 years. Perhaps it was because she was a dancer for over 20 years.
On the outside, she's the picture of health. But on the inside, lesions are forming on her brain and spinal cord. Little by little, multiple sclerosis is robbing Kelly of her balance, mobility, hearing and vision.
Kelly has the most common form of MS, relapsing-remitting, in which new symptoms may suddenly appear and, a few days or months later, disappear. Or an existing symptom may get suddenly worse and then, just as suddenly, remit. It's an unchoreographed attack, impossible to predict. What is known is that more than half of those diagnosed with relapsing-remitting MS will become progressively more disabled.
Kelly's MS is getting worse, the spikes coming more often, their severity increasing each time. On a bad day, she walks with the aid of a cane.
"I'm realistic that I will live most of my remaining life in a wheelchair," Kelly says, "so I want to consider anything that will extend my life as it is today."
That's why Kelly, who works at Queen's University as Manager of Annual Giving, is travelling to the U.S. for Liberation Treatment on April 6.
The unproven but promising treatment pioneered by Dr. Paolo Zamboni of Italy is not available in Canada.
Kelly has spent the past year researching the controversial treatment and following the stories of people who have had it. It's one way she deals with her disease. When she was first diagnosed with MS, at the age of 28, Kelly handled the shock by finding out everything she could about the disease.
So far, her MS has resisted the few drug therapies available in Canada. The only one she hasn't tried can cause a rare and fatal brain disease.
"I know Liberation treatment won't cure MS, but I've almost run out of options in Canada," Kelly says. "I'm only 31, and MS is affecting my life greatly. I need to slow things down. I need to be well in order to do everything I can for everyone else in my life.
"I know Liberation isn't proven, but the risks are really, really low.
"I hope it slows the disease down. Being a patient with MS makes your life scary. You never know what you will be like when you wake up. Will I be deaf? Blind? Will I be able to move? Sometimes my MS is really active; sometimes I need a cane to walk. Every day it's becoming more debilitating."
Zamboni embarked on his intensive study of MS when his wife was diagnosed. Scientists knew that patients with MS had higher than normal deposits of iron in their brains. Zamboni discovered that, in almost all MS patients, the veins in the neck that drain blood from the brain were narrowed, twisted or blocked, a condition known as chronic cerebro-spinal venous insufficiency (CCSVI). Enlisting the help of a vascular surgeon, he began a study in which a balloon was used to open up the veins of MS patients and "free up" the blood flow, hence the term "liberation treatment".
The procedure was initially treated with scepticism, since MS has always been believed to be an autoimmune disorder, not a vascular disease. But since then, studies have multiplied around the world and more and more people with MS are seeking the treatment. The MS Society of Canada is cautiously optimistic about the treatment and has issued a request for operating grants to study the relationship between CCSVI and MS.
In the meantime, Kelly has booked an appointment to undergo the procedure in San Diego, California on April 6.
The procedure itself will cost $11,000 U.S. Add in airfare, accommodation and after-care and it brings the total to over $15,000. To help defray the costs, friends have organized a benefit concert, to be held at the Queen's University Grad Club featuring local bands, The Monogamists, Shameless Façade and Telefoto, on Friday, Feb. 25 at 9 p.m. Tickets are available at Brian's Record Option, The Grad Club and from Kelly at darcie@darciekelly.com.
A bank account has also been opened for Kelly at RBC and deposits can be made at any RBC branch to account number 02402-5062443.
An optimist by nature, Kelly considers herself fortunate to be able to have the treatment while her MS is still in the relapsing-remitting stage, before any disability becomes permanent.
"If I can get it under control now, perhaps there won't ever be any permanent disability.
"Liberation Treatment has already given me hope that the fear won't be permanent in my life, that it will give me relief so my MS won't be as active."
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