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Nova Scotia woman says rare disease could end her life before Christmas
HALIFAX -- A Nova Scotia woman is pleading for her life as she battles Evans Syndrome – a rare blood disease she says could take her life before Christmas arrives. By posting videos online seeking help, she’s garnered a lot of internet attention and hopes her misfortune will help raise awareness of the disease.
“Before my eyes close, please do me one favour,” says Mary Ann Conrad in a video she posted to Facebook on Friday. “Read about Evans Syndrome, so you understand what we're going through.”
Conrad, who has been prescribed an endless cocktail of pills, says Evans Syndrome has robbed her of her energy.
In addition to low energy, the blood disease causes bruising, faintness, and now complications such as severe migraines – which cause Conrad to lose her motor function.
Conrad says she needs a new blood pump along with a full treatment of medication. At a cost of $20,000 – she says she and her husband have been required to sacrifice.
“We cashed in our RRSPs, we took our savings, we remortgaged our house, we cashed in our life savings, our life insurance,” says Conrad. “Everything is gone.”
Conrad says the treatment isn't covered by insurance because it's considered an experimental procedure. She says, if she can't get the medication by Tuesday, she won't live long enough to see Christmas.
“They're hoping this time that it'll push me into remission,” says Conrad. “If I get a year or two with my husband that I feel half decent, that I have an immune system where we could go out like human beings – that's all I ask for.”
Conrad’s husband says he tries to remain positive.
“We just sort of do one day at a time,” says Allan Conrad. “We get up in the morning and just go along. If the day goes by without any new tragedies, it's a good day.”
Advocates say Evans Syndrome isn't well known, so patients often have to do their own research.
"So us, the caregivers, the patients; we become the best advocates there are because we have the time, we have a special interest invested in it," says Liliana Pickens, with the Evans Syndrome Foundation.
Assisting Conrad in her desperate time are her family and friends who started online fundraisers for Conrad – for which she is grateful. As of 10 p.m. Monday night, the $20,000 goal had been surpassed and $23,310 had been pledged.
“If anything happens and I don't make it, Merry Christmas to you all and thank you again – I appreciate everything you've done for us,” says Conrad.
Meanwhile, Conrad notes that Nova Scotia Health Minister Randy Delorey has attempted to refer her case to the Nova Scotia Health Authority. However, she didn’t receive funding in time. With her condition worsening, she says she’s contacted over 60 politicians hoping for help.
With files from CTV Atlantic Emily Baron Cadloff