A few years ago, Alison Legge woke up in severe pain. She started to panic, but discovered, to her horror, that she wasn’t able to verbally express what was going on.
“I couldn’t open my jaw,” Legge tells the North Shore News. “A standard opening is between 40 and 45 millimetres, and mine was down to 19.”
Legge, who grew up in North Vancouver, knows this kind of stuff well.
She was diagnosed with juvenile arthritis at age three -- described as an “autoimmune disease affecting every three in 1,000 children in Canada that attacks joints and steals childhoods,” notes a release from Cassie and Friends Society. By age eight she started having arthritic symptoms that affected her jaw, ability to open her mouth, and even chew.
“It was always kind of controlled with medication. ... It never really stopped me from doing anything,” she says about her childhood diagnosis. “(But) I was told when I was eight that I was going to need reconstruction surgery at some point.”
She ended up undergoing that first round of reconstruction surgery when she was 16, shortly after waking up in a start in December 2012 unable to move her jaw.
And five months ago, Legge actually underwent a double jaw replacement surgery in an attempt to ease the pain, which had gradually increased during the past few years.
“(The surgeon) basically went in and took out my jaw joints and put in metal ones. I have a titanium and plastic jaw, kind of like a knee replacement,” she says. “That was four and half months ago and it has been a night and day difference.”
On June 24, Legge, who is now 22, will be joining up with Cassie and Friends -- a Vancouver-based national charity devoted to helping kids with juvenile arthritis -- in the inaugural position of chair of the society’s new Youth Leader Network.
She will be leading more than 150 youth during the Scotiabank Charity Challenge 5K or Half Marathon in Vancouver on Sunday, an event that Cassie and Friends has participated in for the past 10 years.
As the society’s new youth leader, Legge says it’ll be her role to advocate and share information for youth with juvenile arthritis and other rheumatic diseases, specifically for youth that are “ages about 15 to maybe like 26, because there’s a lot of resources out there for young kids and there’s a lot of resources out there for adults diagnosed, but that middle age group is lacking quite a bit.”
Due to the pain and uncertainty her arthritis caused her in high school, Legge was forced to miss out on her first year of university while she tried new types of pain management. She ended up starting her tenure at the University of Oregon in 2014, of which she recently graduated.
“I couldn’t just keep putting my life on hold, who knew how long it was going to be,” she says.
Since receiving her jaw replacement in February, the pain, at least for now, is under control, she says. “I am so happy with it. I still have some pain, but I haven’t had to take anything stronger than a Tylenol in four months.”
Asked what her advice would be for other youth or young adults living with arthritis or rheumatic diseases, she says it’s important to never stop pushing for answers.
“You got to keep pushing through,” she says.
