LEWISPORTE - The countdown is on for Imelda Ivany.
On Oct. 12 the 51-year-old is set to meet with a doctor in Germany where she will undergo the experimental liberation procedure introduced by Dr. Paolo Zamboni to treat people with Multiple Sclerosis (MS). She will undergo an MRI and CT scan as a prerequisite to having the procedure. These tests will tell the doctor where the blockages are in her veins.
Ms. Ivany - who is originally from Norris Arm - started showing symptoms of MS around 1982 and was diagnosed in 1985. She desperately wants to have the procedure done as soon as possible.
When Ms. Ivany first heard of the procedure three or four months ago her first thought was, “Oh my God - where do I have to go to get it.
“You hear tell of the ones who have gone there and come back doing so good,” she said. “It’s like a miracle.”
She proceeded to search the Internet for information on the liberation treatment, a procedure similar to that used to repair coronary arteries in angioplasty. Ms. Ivany knows of a person in Buchans who had the treatment and has experienced positive results. She contacted that persons doctor to inquire as to her chances of the procedure and she heard back on Aug. 31 that she had an appointment for Oct. 12.
Expecting a lengthy wait, Ms. Ivany was thrilled to receive an appointment at such an early date. The problem is that she needs to come up with $15,000-$20,000 to get to Germany (along with a caregiver) to have the procedure. Since the procedure is not permitted to be done in Canada, Ms. Ivany has to travel for the procedure. The biggest expense is not the procedure itself but rather the travel costs.
Some people might wonder why she just doesn’t reschedule until she can come up with the money? That is where the other problem lies. Ms. Ivany fears that if she cancels the appointment set for October she will have to wait another six-12 months for another appointment. For her that could mean a further progression of her MS.
“I can’t wait that long,” she stressed.
Ms. Ivany uses a wheelchair and has home care. While she realizes the liberation treatment may not be able to do anything to give her back the use of her legs, one thing she is hopeful of is regaining use of her hands. Her fear is that by waiting for the procedure she won’t even have a chance of this happening.
“MS is a cowardly disease - you never know what’s going to happen.” - - Imelda Ivany
“MS is a cowardly disease - you never know what’s going to happen,” she said. “I don’t want to go from being in a wheelchair to having to be in bed. Even if he tells me this will go no further (with the procedure), even that is a blessing.”
That is why Ms. Ivany and one of her home care providers, Gayle Foss, are undertaking an immediate fundraising effort and public plea to help raise the funds she needs to get to Germany.
“Everything is happening so fast, but we are going to try and raise the money she needs in time for her October appointment,” said Ms. Foss.
The local effort includes a giant yard sale being organized by Ms. Foss. That event is set for Oct. 2 from 9 a.m. - 6 p.m. at the Campbellton Community Centre. Ms. Foss’ granddaughter is also pitching in by holding a recycling drive. Anyone with items to donate to the yard sale or recyclables can call 261-2443; 261-2148 or 261-2223. Other fundraisers will include a gospel concert involving area churches and a bingo in Norris Arm. As of The Pilot deadline the final details of these events were not available, but keep a look out in your community for promotional materials on these events. Anyone wishing to make a donation can do so at Scotia Bank. Simply mention that it is to be deposited to Imelda Ivany. Ms. Ivany also has her brother and sister, who are living away, working on fundraising efforts as well.
Quicker action
Ms. Ivany was asked what she thought of the Provincial Government announcing plans to fund a Newfoundland and Labrador-based observational study of MS patients who have chosen to undergo the Liberation Procedure. She says they are not doing enough.
The study is not funding people to have the procedure done at this time; rather, patients from the province who have chosen to have the procedure done will be invited to participate in the observational study. Information will be collected at one, six and 12 month post-procedure periods.
“Six months to one year is like a lifetime to someone with MS,” said Ms. Ivany.
.jpg)
.jpg)
