Kids in chronic pain run for charity
Twenty-two-year-old Alison Legge has lived in chronic pain with juvenile arthritis since she was three.
She’s had three operations on her jaw and because of heavy medication has felt at times like she was sleeping, more than living.
The young North Vancouver woman never thought it was possible to run in a race because of the agony the impact on the pavement caused her joints and jaw.
But on Sunday, she’ll lead a team of more than 150 kids, teens and friends in the Scotiabank Vancouver Half Marathon and 5km Charity Challenge. She signed on to lead the race as part of her new role as chair of the Youth Leader Network, an arm of the not-for-profit organization Cassie and Friends Society, that helps kids with juvenile arthritis.
For many of these children, who are severely restricted in their movement, running or walking a five-kilometre race is a big deal. Legge credits improved medications and a greater support network for helping them run.
Since having a double jaw replacement surgery five months ago, Legge has slowly trained doing yoga and light running.
“With the pain I was always exhausted and it has been really hard to find an exercise routine,” said Legge, who just finished a math degree at the University of Oregon.
Attempts to ease her pain through surgery have been unsuccessful in the past, but she says now that the joints have been replaced in her jaw, the pain is subsiding, enough to start weaning off the opiates.
“I think I’m ready for Sunday,” she said. “I’m excited to get off the painkillers, and to feel what real life is like.”
She said she hopes to raise awareness about her plans to help kids with arthritis bridge the gap into adulthood, helping them with tasks such as applying for universityorajob.
First diagnosed at age three, Legge lost the ability to open her mouth and chew by age eight.
By age 16, she had her first reconstructive jaw surgery, a procedure that caused her to miss three weeks of school and left her face swollen for six months.
During university, she was experiencing crippling migraines and was taking heavy painkillers.
She is always on medication for the arthritis that affects all her joints, including a low dose of methotrexate, a chemotherapy drug.
She added that being on medication all the time and dealing with chronic pain can cause anxiety and depression.
“Some days I just get so tired of being the only 20-year-old that doesn’t drink, of constantly feeling like nobody believes me, of always being the person that cancels last minute,” she said. “I just get so tired of fighting ... but then I remember my parents, my sister, my brother, my amazing friends that have stuck by me and I realize who and what I’m fighting for.”
Cassie and Friends has been fundraising for juvenile arthritis at the Scotiabank run since 2007, when the organization’s founder David Porte ran for his daughter, Cassie, who was diagnosed with the disease at 18 months.
Cassie, now 13, was in a prolonged period of remission from her arthritis until just last month. She is now in a flare and has pain and difficulty moving many of her joints, making it difficult for her to run.
About 24,000 children in Canada have some form of arthritis or pediatric rheumatic disease, according to the society, with the most common being juvenile idiopathic arthritis.