Saint John woman determined to live life to fullest despite illness
Kathleen Gagnon can no longer eat except through a tube in her stomach, her joints often dislocate when she walks, and her weight has dropped from 150 to 96 pounds.
The 19-year-old scholarship student from Saint John was in her first year of neuroscience, with her eye on becoming a doctor, when instead, she became a patient.
Her mother, Jacqueline Gagnon, says her daughter started calling home.
"She was calling me and telling me how much weight she was losing. And she was vomiting and just feeling terrible all the time."
It took months before she was diagnosed with Ehlers-Danlos Syndrome. The diagnosis happened because of a lucky online connection with a young woman in British Columbia with the same symptoms.
"She sent me some pictures of different weird things people with EDS can do with their joints. I didn't think I could do any of them, until I tried them," says Gagnon, demonstrating as she reached up and pulls back her thumb to touch her wrist. "Then I saw I could."
A geneticist at the IWK in Halifax made the diagnosis.
"He noticed right away how I was sitting with my legs crossed and twisted around each other like a pretzel," she said.
"And then he saw the colour of my legs, they were purple, like the blood pooling. Splotchiness and stuff, that's kind of the trademark."
Tube fed
Gagnon is now fed through a tube. She gets liquid overnight through a tube in her arm.
But she continues to lose weight because she is allergic to almost all the concoctions that can keep her fed.
The young woman is quick to laugh, as she admitted she has watched the entire offering of Grey's Anatomy – twice.
From her bed, she designed T-shirts that her mom sells online. That bit of money goes toward yarn she crochets into tuques for the homeless.
Gagnon created a blog called Green Eggs and Spoons, about her experience in hopes of educating people about the syndrome.
And she rallied people to send over 700 letters to the minister of health with hopes New Brunswick would start paying for the feeding bags and tubes for adults.
She found out, at 18, that she no longer qualified.
The government agreed to pay for one year of her food and tubes, something that would have cost her parents around $35,000.
Extra-mural nurses bring the saline solution to Gagnon at home and clean out her line once a week.
Costs increasing
The Gagnons are a middle-class, self-employed family, with no private insurance. Jacqueline and Roland Gagnon say they are grateful for that help, because the costs pile up quickly.
"Even just from simple things," said Jacqueline. "Like an increase in the use of Tylenol, gauze pads, we give her Pedialyte because she's not able to get much fluids in by mouth.
The tube feed supplies, her food, is all very costly. We have it estimated that for her two feeds as well as her fluids by IV, overnight, that all in all it would be about $50,000 a year in expenses."
Gagnon said there is good that has come out of this.
"I've got to the point where I realize I have to stop waiting. To feel better, to get better. I just have to enjoy each day as it comes," she said.
"As cheesy as it sounds, like live every moment to the fullest because I don't know if I'll miraculously get better one day and accomplish everything I want to get accomplished. But I know I can still live a happy life, and enjoy doing things anyways."
Her mother agrees.
"She'll figure something out, if her original plan doesn't work out. I know it."
A fundraiser to help the Gagnon family will be held July 28 at Lily Lake in Saint John.
