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Deep Cove teen on systemic juvenile idiopathic arthritis

Picture of Senya Kyle who lives with systemic juvenile idiopathic arthritis

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.

Currently, Senya undergoes IV infusion every three weeks. Before that, her treatment regime for five years was a daily injection. According to North Shore News, she “went through trial and error with drug treatment until the biologic tocilizumab came along, stopping any more joint damage from starting.”

When Senya was young, her doctor described arthritis as her body having too many little soldiers fighting infection. Those soldiers end up fighting healthy joints. The biologics work like sponges and go in and soak up the extra soldiers.

In sharing her story, Senya hopes that six-year-old Landen, a young Sooke boy living with sJIA, doesn’t have to suffer the way she has. The Health Canada-approved biologic canakinumab could stop Landen’s inflammation, but at $225,000 per year, it’s just too expensive and the province of British Columbia, under BC PharmaCare, won’t cover it. Without aggressive drug therapy, Landen’s sJIA will rob him of his childhood. Before canakinumab, he has tried two other treatment that had no effect on the inflammation.

Landen’s telltale symptoms were a high fever and full body rash – the same symptoms Senya experienced. Kids with sJIA go from being active to extremely lethargic, like a limp rag doll on the bed. Landen used to be a competitive BMX rider; however, he now uses a walker and lives with chronic pain.

Senya’s mom, Rosanne Kyle, is heartbroken about Landen’s denied access to canakinumab, especially after seeing what happened to her daughter in the absence of proper treatment. Rosanne is frustrated with the Ministry of Health’s response, which is that arthritis is a complicated disease with many faces. She further explains to North Shore News: “It’s so short-sighted for these drugs not to be covered because Senya is going to end up with at least five surgeries on her foot. She’s been in hospital for inflammation around her lungs in the past. She’s been in and out of the hospital so much (and there’s) huge cost associated with that.”

Rosanne wants to remind readers that juvenile arthritis is just as common as juvenile diabetes and afflicts three in 1,000 kids, but doesn’t get as much attention as juvenile diabetes.

Senya has already suffered permanent damage from childhood arthritis – her still-growing foot has branched out in “funky” ways to accommodate for the joint damage. Her message to the public is clear: “Arthritis has caused a lot of damage for me personally and I don’t want to see Landen go through that same pain. He deserves a happy and healthy childhood. It’s not too late for Landen.”

Landen’s story has struck an emotional cord in B.C. residents. More than 3,500 people signed an online petition aimed at B.C. Health Minister Adrian Dix for canakinumab coverage. Senya’s family added to the campaign by sending a letter to North Vancouver-Seymour MLA Jane Thornthwaite telling her their sobering juvenile arthritis story and how canakinumab could help Landen.

On December 17, North Shore Community Players held the finale for The Doctor of Oz, and donated $4,500 to Cassie and Friends – a Vancouver-based charity supporting children and families affected by juvenile arthritis and other rheumatic diseases. The show’s choreographer, Julia Chayko, lives with rheumatoid arthritis and is a well known arthritis blogger.