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Saturday, October 23, 2010 1:30 AM
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Share Ward
http://www.emcbarrhaven.ca/20101021/news/Barrhaven+MS+sufferer+seeks+controversial+U.S.+treatment
The account number is wrong. The correct number is 2831-6404941
EMC News - Long-time Barrhaven resident Sharon Taylor's battle with Multiple Sclerosis began in 2001 when she suddenly lost vision in her right eye and the depth perception in her left. Following closely behind
that was a cascade of symptoms spanning her whole body that forced her
to put her job as a childcare provider on hold and caused her to
question whether she would ever be free of the pain and discomfort of
MS.
Nearly a decade later, Taylor is looking forward to the end of December and what she hopes will be the end of - or at least a reprieve from - the overwhelming symptoms that have seriously diminished
her quality of life and capacity to be a wife, mother, and business
owner.
On Dec. 29, Taylor plans to be in Tampa, Florida, where she will undergo a controversial procedure called the CCSVI Liberation Treatment - controversial not because of the risk involved or a
perceived ineffectualness, but because Canada has not made the procedure
available to its citizens, nor has it invested money into studying what
some MS sufferers call a 'miracle' treatment.
"Canada has the second largest MS population in the world and we can't have this done," said Taylor. "We're not calling it a cure, but for whatever reason, it
works. I've talked to people who've had it done and they've noticed the
effects while still on the operating table."
The Liberation Treatment was developed recently by Dr. Paula Zamboni, and involves an angioplasty (a widening via inserts) of the veins draining the central
nervous system. In September, Taylor received an ultrasound Doppler scan
in Toronto and was diagnosed with Chronic Cerebro-Spinal Venous
Insufficiency (CCSVI) - a compromised blood flow from these veins.
"A few days after I went, OHIP started saying they wouldn't cover the cost of the scan," said Taylor. "I have no idea why - I talked with
(Etobicoke North) MP Kristy Duncan about it and we can't figure out why
OHIP would take it off (their list), when so many MS sufferers are
getting it done."
Neither can Taylor understand why the Canadian government refuses to study trials of the procedure, when new treatments for diabetes, obesity and cancer are constantly being developed in her
country. Among the countries performing it are Poland, Costa Rica,
Kuwait and India. In her bid to be rid of her symptoms, she considered
traveling overseas to have the procedure done.
A Barrhaven resident since 1993, Ms. Taylor was an active community volunteer, daycare provider, and nurturing mother to her two sons, now 18 and 20,
and loving wife to husband Jim. The onset of MS, occurring soon after
her mother's diagnosis of Alzheimer's, left no part of her body - or
life - untouched.
The aforementioned vision changes, which, like all other MS symptoms, are variable, caused her to stop driving. Muscle spasms, burning pain, crippling fatigue, cognitive problems and unsteady
balance (among other symptoms) caused her to close the doors of her
daycare after 12 years in operation and go on disability.
Treatments and medications meant to suppress MS symptoms only added new symptoms in the form of side effects to her life. Being proactive, she sought out
new treatments, performed research and in the spring of this year was
shocked by what she saw on an episode of W5. The episode focused on the
CCSVI Liberation Treatment, and the images and testimony of MS sufferers
who had their symptoms rapidly diminish as a result of the procedure
gave Taylor new hope for her future.
"It's all over the world," she said. "The angioplasty costs $1,500, is very easy to perform, and takes 20 minutes to do. It's invasive, yes, but for God's sake it's
safer than other treatments on the market. Even if it gives me three
more years before I have to get it done again, can you imagine the
millions of (disability) dollars saved that could go towards another
disease or more research on MS?"
Taylor dreams of a day when she doesn't have to take a myriad of prescription medications each day. Being free of symptoms would mean less financial stress on her country,
she said.
"If I could work full-time again, it would mean one more person off of CPP disability, therefore less financial burden on our government. Treating an MS sufferer with an angioplasty is about
$1,500 in our country. How much does it cost to support a person with MS
in medications, rehab, assistance and disability? My MS medications
alone cost $3,000 a month."
The treatment itself, she said, seems like a no-brainer (though she admits she's not a medical expert). In her words, "Why wouldn't you want to open up blocked veins?"
"I've done a lot of research and I'm comfortable putting my body through it, and my family is too," she said.
While she longs for the day when she can function normally again, a day she hopes is close at hand, Taylor said she won't stop pushing for the
treatment to come to Canada. Between now and December, her and her
family hope to raise the $14,000 it will take to have the procedure
performed in a Tampa hospital.
A fundraiser is planned for Nov. 20 and will be held at the Barrhaven Legion, located at 3500 Fallowfield Rd. Billed as the Send Share to Tampa Fundraiser, the event will run
from 7 p.m. to 1:30 a.m. and will feature live music, dancing, a silent
auction and a 50/50 draw.
Tickets are available by calling James Taylor at 613-825-2423, or e-mailing corporatecompliance@rogers.com.
Donations can be made at any TD bank location for her "in trust" account
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