Show your colours for #RareDiseaseDay "We’ve had dark moments and failed medications. We recognize how much harder our son has to work when he is flaring just to do normal things, like walk up the stairs, go to school, be with his friends." -Parent, Sara Ethier on her son who lives with TRAPS- a [...]
"Imagine that your 4-year-old wakes up and cannot move. And every basic function has their body locked down in paralysis... As a parent—what is going through your mind?" Click the link below to learn how the Matzke-French family from our pediatric rheumatology patient community found a way they could help prevent other families and [...]
He's better than he has been... Written by: Sara Ethier"I wrote this piece to share my son’s journey of living with a rare, one in a million Autoinflammatory Disease.Rare means that there is not a lot of research or treatment options available to children like my son who suffer. I appreciate the small steps [...]
Meet Mackenzie! Mackenzie Riddell is a 14 year old synchronized swimmer who was diagnosed with juvenile idiopathic rheumatoid arthritis (JIA) when she was 3 years old. On Saturday, January 30th (4:30 pm PST/7:30 pm EST), she will be sharing her story and advice for staying active at the upcoming Physical Activity with Rheumatic Disease [...]
Hey there, my name is Manahil. I am a 20-year-old student at the University of Alberta, currently specializing in psychology and working a research job with the Department of Medicine and Dentistry. The road here was not easy, let me tell you that. Though it was not easy, I would never change a thing. [...]
#RareFinds w/ @DrPedsRheum Did you know it can take up to 17 years for research to trickle from journals and publications into your child’s clinic appointment? When we heard the recent American College of Rheumatology (ACR) Meeting was a “big one for Pediatric Rheumatologists,” we wanted to know why. So we asked Dr. Herman [...]
This blog was originally posted by the Centre for Blood Research website on November 5, 2020 By Sarah Bowers, Junior Researcher, Brown Lab at BCCHRI As health researchers, many of us are familiar with the term “patient-oriented” research and recognize the value of engaging various stakeholders in the research process1. But what does patient-oriented research look [...]
Is your family beginning to think about the transition from pediatric to adult rheumatology care? We spoke to one teen who talks about her diagnosis with rheumatic disease at age 14, and how she's been taking control of her condition two years later. This is a powerful read that offers a few starting points [...]
Is your family prepared to make the move from Pediatric to adult rheumatology care? If you're teen is graduating next year or in the near future, how can they go through the transition from pediatric to adult care as smoothly as possible? We connected with Morgan Harris who recently graduated in 2020 and has [...]
Uveitis (inflammation of the eye) is a serious complication occurring in 20% of children with Juvenile Arthritis, a condition that is hard to diagnose without regular eye screening. Treatment of Uveitis can often be aggressive, sometimes calling for eye drops multiple times a day in order to prevent vision loss and permanent damage to [...]
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