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Our baby boy Bruce was diagnosed with Systemic Juvenile Arthritis (SJIA) at 18-month old.
There are six JIA subtypes. About 10 percent to 20 percent of children with JIA have a rare and serious subtype called systemic juvenile idiopathic arthritis, or SJIA. “Systemic” means it affects not only the joints but also other parts of the body, including the liver, lungs, and heart. SJIA also differs from other JIA subtypes in that it’s the only one considered an autoinflammatory rather than an autoimmune disease, and it not easily diagnosed.
Bruceys SJIA journey started in April 2017 – he had a very high fever that would come and go, but Brucey couldn’t quite shake it. When we first took Bruce to the doctor, the pediatrician suggested he was suffering from a virus or the flu. Just wait it out, he suggested.
So we tried. Over the next 2 weeks, his symptoms came and went and changed in ways that perplexed our family and daycare teachers. Sometimes Bruce would feel better in the morning with no fever and relatively little discomfort. Then his temperature and pain would spike after lunch and our daycare would send him home. Or, he would awaken feeling miserable only to watch the symptoms mysteriously lift later in the day.
April 13th, 2017, we took Bruce to the ER after 9-days of fevers. We were assessed by almost every ER Pediatric Doctor, working that shift. After blood work and x-rays, they sent us home with instructions to return the next morning. Upon returning, we did more tests and were administrated into the Stolley for a 5-night stay.During Bruce’s 5-days at the Stollery he was quarantined and underwent more tests. As Bruce was not showing all symptoms of SJIA, they were unable to diagnose him. We were discharged and sent home, with very little information.
The next 4 weeks Bruce’s symptoms worsened and we were in/out of the ER and our family pediatric office. On May 15th, we received our diagnoses that Bruce had SJIA, and was experiencing his first flare. Following his diagnosis, Bruce was referred to one of the best pediatric Rheumatologist in Canada (maybe I am bias, but we love her), and was assigned a registered nurse, that has been so wonderful and great when we have had concerns/questions. His SJIA team started treating his flair immediately. Bruce responded so well to the treatment, and our little baby Bruce (at only 20 months) was returning back to his happy healthy self. His first Flair ended in Feb 2018 and Bruce was able to go off medication. October 2018 Bruce relapsed and went into his second flare Becuase of Bruce’s SJIA team at the Stollery we were able to start treatment immediately. Today Bruce is still considered in a flare and is taking daily medicine. He stays extremely active and with his current treatment he is experiencing no SJIA symptoms. We pray every day that his SJIA will stay under control, and that he will be responsive to the treatments recommended by his Rheumatologist team.
We are grateful for the Stollery Children's Hospital and the team of doctors and nurses that have taken so much time to properly diagnose and treat our little Bruce.
As the prevalence of arthritis increases, so does the demand for investment into cutting-edge research, proactive advocacy and innovative information and support that will deliver better health outcomes for people affected by arthritis.
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