Picture from North Shore News: http://www.nsnews.com/lifestyle/deep-cove-teen-has-cautionary-health-tale-1.23127827
Deep Cove resident Senya Kyle has lived with chronic pain from systemic juvenile idiopathic arthritis (sJIA) since she was a little girl. Senya is now a Grade 10 student at Seycove secondary. Instead of playing soccer and hiking Quarry Rock with her friends and participating in other school activities, she watches from the sidelines. After school, she can’t even join her friends for a walk around the mall.
Due to her sJIA, Senya has fused vertebrae in her neck, along with serious joint damage in her feet. As of yesterday, the number of ankle surgery Senya has gone through is four. According to Senya, every step she takes is a dull ache mixed with stabbing pain in her ankle. Sometimes, her pain is so unbearable that she cannot move. She is forced to live a sedentary life at the young age of 15. In an interview with North Shore News, Senya says: “That’s pretty much all I can do, is sit down and hope that (the pain) will go away.” At her worst, Senya had 40 joints inflamed at one time.
Arthritis Consumer Experts and Cassie and Friends Society have launched a canakinumab access campaign.
Juvenile arthritis (JA) affects approximately 24,000 infants to teens in BC and Canada, or 3 in every 1,000, making it one of the most common causes of chronic disability in children. Ten to 20 percent of those children have systemic juvenile idiopathic arthritis (sJIA), a severe and potentially life-threatening form of the disease – and many can’t get the medication they desperately need.
In partnership with Arthritis Consumer Experts, Cassie and Friends Society is leading a call for the BC Government to drastically improve the outlook of children with sJIA by allowing reimbursement coverage for canakinumab for the small number of children who need it.
Why have we launched our canakinumab access campaign?
Canakinumab is publicly funded in other Canadian provinces/territories but not BC, putting British Columbian children living with sJIA and other autoinflammatory diseases at a horrible disadvantage by denying them access to a life-changing therapy.
Picture taken from the @SickKidsToronto Instagram account
On Friday, patients at the Hospital for Sick Children in Toronto attended a Great Gatsby-themed prom. For many, this was a second chance at a fairy-tale and to experience what they may have missed at their own school.
This year’s prom marks the hospital’s eighth year of hosting this event. Both in-patient and out-patient teens who missed their own school proms due to illness or treatment are invited. For one night, they can forget about their illness and be a normal teenager. The event connects patients to other people who can understand what they’re going through.
In an interview with CTV News Channel Friday, Vanessa Williams, who gets treatment at SickKids for anxiety issues, said: “The SickKids prom allows kids to interact with each other and make new friends and make connections as well. Williams is also a member of the children’s council who helped to plan this year’s prom.
Join Cassie and Friends for their Scotiabank 5K & Half Marathon Team to raise money for all the kids affected by juvenile arthritis and other rheumatic diseases in BC.
Over the last 10 years, Team Cassie and Friends has laid it all on the course for kids with arthritis. Their team of 100 runners and walkers, from toddlers to grandparents, have transformed the lives of kids and families diagnosed with Juvenile Arthritis and other rheumatic diseases in BC and across Canada.
But, there is still so much more we can do to support and connect families, fund critical research and raise awareness – we hope you’ll join Cassie and Friends! Make a gift or sign up to be a part of their team. Cassie and Friends has created a virtual run for those who are unable to attend the Vancouver event.
Click here to register. Please use charity pin codes (all child registrations will be reimbursed): 5K -17CFS5K or Half Marathon– 17CFS21K
If you have any questions, please feel free to contact Jennifer Wilson at firstname.lastname@example.org or visit cassieandfriendsrun.ca or David Porte at email@example.com
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