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‘Don’t hide behind your sickness’: N.S. woman to receive life-saving treatment for rare disease

Mary Ann Conrad and her husband Allan are seen in this undated file photograph. .
Mary Ann Conrad and her husband Allan are seen in this undated file photograph. . GoFundMe

Mary Anne Conrad says she isn’t afraid to die. She’s just asking for a little more time.

The Nova Scotia woman lives with Evans syndrome, a rare blood disease in which the immune system destroys the body’s red blood cells, white blood cells and/or platelets.

Until recently, Conrad thought the disease would take over, leaving her with just weeks to live. But thanks to overwhelming support from her community, Conrad says she’ll be around a bit longer.

“This will be the last treatment I’ll ever be able to have,” Conrad told Global News in a phone interview Monday.

“I’m fine with that. I just wasn’t ready to go now.”

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Conrad was diagnosed with Evans syndrome 10 years ago. Receiving that diagnosis, she says, came with challenges.

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Doctors in Nova Scotia were unable to determine why she was constantly feeling tired, or the cause of her frequent bruising. Wanting to get to the bottom of what was wrong, she went south of the border for answers.

“I just kept going downhill. I was getting weak, I couldn’t eat, everything was just [falling] apart,” she said.

“At this time, I was praying for death.”

She was able to find those answers at a hospital in Maryland, where a doctor told Conrad her T-cells in her immune system were under attack. She initially thought she had cancer, until she discovered it was Evans syndrome.

What followed was a steady stream of medications, including an experimental drug that wasn’t covered by insurance. Feeling desperate, Conrad opted for the treatment — something that provided her with instant relief.

But Conrad says that feeling came with a hefty price tag.

“I was dying anyways, so at this point I said, ‘What does it matter?’” Conrad said. “So I went for it.”

“In total … there’s no less than $300,000 pumping around in my system.”

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Nova Scotia Health Authority undergoing significant organizational restructuring
Nova Scotia Health Authority undergoing significant organizational restructuring

As a result, Conrad and her husband, Allan, have been forced to make some sacrifices. They mortgaged out their house, gave up their savings and life insurance, and took out loans.

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“We did whatever we could possibly do to keep me alive,” she said.

Over time, her symptoms returned. Conrad needed $3,800 more to replace her blood pump, which can range from $26,000 to $29,000. She contacted as many MLAs as she could — 63 in total — to no avail.

As a final plea for help, she posted a video on social media for anyone who would listen.

The response, she says, was staggering.

“Anything that was on my mind at that time came out in that video,” she said.

“I know what’s good for me, I know what this disease does to people, I know that nobody knows about this disease.”

As of Friday, $22,500 has been raised for the life-saving procedure to replace the blood pump.

Speaking at a press conference on Monday, Nova Scotia Health Minister Randy Delorey acknowledged that the province is aware of Conrad’s situation and work is “ongoing” to connect her with the right clinical teams for advice and recommendations for future steps.

“I can’t speak specifically to any individual citizens’ health conditions or files, but suffice to say, any time Nova Scotians do run into situations, particularly the ones that may be extraordinary, outside of the norm with rare conditions, people within the health system do respond,” Delorey said.

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Conrad hopes her story not only gives herself a little more time on earth, but raises awareness of a infrequently-discussed disease.

“I just want people to know about Evans [syndrom] before my eyes close,” she said.

“It’s not just a disease for one person. It’s a disease for your husband, it’s a disease for your family. You all go through it together. It financially drains you, it mentally drains you and it physically drains you.”

“Don’t hide behind your sickness,” she added, holding back tears. “It’s just going to destroy you.”

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