Senya Kyle knows Landen doesn’t have to suffer the way she has.
The Deep Cove resident has lived with chronic pain from systematic juvenile idiopathic arthritis, which has persisted all throughout her childhood and into her teenage years.
Had the right drug therapy been around a decade ago, it would have been a different story for Senya.
Instead of being an active Grade 10 student, Senya sits on the sidelines while her friends at Seycove secondary play soccer and hike Quarry Rock.
She can’t even join them for a walk around the mall.
Senya has fused vertebrae in her neck, along with serious joint damage in her feet requiring a fourth surgery, which she was scheduled to have yesterday.
Every step Senya takes is described as a dull ache mixed with stabbing pain in her ankle.
The pain can be unbearable at times, resigning Senya to a sedentary life at 15 years old.
“That’s pretty much all I can do, is sit down and hope that it (the pain) will go away,” says Senya.
Senya had up to 40 joints inflamed at one time before the right treatment came along to help alleviate her pain.
When she was first diagnosed, biologics, which block harmful responses from the body’s immune system that lead to juvenile idiopathic arthritis symptoms, were not available.
Commonly used to fight inflammation, the steroid prednisone was prescribed to Senya at that time.
She also went through trial and error with drug treatment until the biologic tocilizumab came along, stopping any more joint damage from starting.
Seyna undergoes IV infusion every three weeks as opposed to the drug regime she was on for five years that was a daily injection.
Arthritis was described to young Senya 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.
For one young Sooke boy a Health Canada-approved biologic exists that could quell his inflammation – but it’s just too expensive and the province won’t cover it.
Six-year-old Landen also has systemic juvenile idiopathic arthritis, which is quickly robbing him of his childhood.
Just like Senya, Landen’s telltale symptoms were a high fever and full body rash. Kids go from being active to extremely lethargic, like a limp rag doll on the bed.
Landen used to be a competitive BMX rider, now he lives in chronic pain and has a walker.
Two of the three treatment options for Landen didn’t touch the inflammation.
The final option, which could save Landen’s life, is called canakinumab. But at a cost of more than $225,000 per year – Landen has been denied PharmaCare coverage – the arthritic antidote is out of reach for his desperate family.
Landen’s story breaks Senya’s mom’s heart, especially after seeing what happened to her daughter in the absence of proper treatment.
The Ministry of Health’s response to the case, which is that arthritis is a complicated disease with many faces, frustrates Rosanne Kyle.
“It’s so shortsighted for these drugs not to be covered because Senya is going to end up with at least five surgeries on her foot,” says Rosanne.
“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.”
Juvenile arthritis is just as common as juvenile diabetes and afflicts three in 1,000 kids, but doesn’t get as much attention as the latter condition, says Rosanne.
For Senya, the permanent damage has been done by childhood arthritis. Just looking at her still-growing foot, it’s branched out in “funky” ways to accommodate for the joint damage.
But it’s not too late for Landen, says Senya.
“Arthritis has caused a lot of damage for me personally and I don’t want to see Landen go through that same pain,” she says, adding he deserves a happy and healthy childhood.
Landen’s story has struck an emotional resonance with many B.C. residents, with more than 3,500 people signing an online petition aimed at B.C. Health Minister Adrian Dix for canakinumab coverage.
Senya’s family sent a letter to North Vancouver-Seymour MLA Jane Thornthwaite telling her their sobering juvenile arthritis story and how canakinumab could help Landen.
On Dec. 17 North Shore Community Players closed their sold-out pantomime, 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, is a well-known arthritis blogger who lives with rheumatoid arthritis herself.
