February 2024

Reine Hodroj – Rare Connection with Bechet’s Disease

By |February 2nd, 2024|Blog, Ontario, Rare Disease Stories, Stories, Toronto|

Reine Hodroj - Learning to Live with Behcet's Disease Living with a chronic illness is an unimaginable challenge, and Behcet's Disease has been my constant companion in this journey. This rare autoimmune condition, characterized by recurrent oral and genital ulcers, skin lesions, and systemic inflammation, has disrupted my life in many ways. However, my [...]

November 2023

October 2023

Seeing Possibilities after Diagnosis: a Uveitis Story

By |October 24th, 2023|About JIA, Advice, Advocacy, Blog, CREW, Rare Disease, Saskatchewan, Stories, Uveitis|

Throughout my life I have been granted many titles; mom, wife, daughter, registered nurse, and writer are just a few. These are the titles that are associated with my name. I could be described as outgoing, humorous, modest, and perhaps kind too. These would be some characteristics that people from a distance would use [...]

Lily’s Journey to Diagnosis, Methotrexate, and Finding A Community of Support

By |October 19th, 2023|Injection, JIA, Medication, Methotrexate, Newly Diagnosed, School, School Toolkit, TMJ|

Meet Lily. One morning, at the young age of 2, our daughter Lily woke up limping and her left knee looked slightly swollen. She didn't seem to show that she was in pain, but was refraining from putting weight on her left leg. We had no idea what happened and didn't recall any [...]

OPT-JIA Premedication Trial

By |October 17th, 2023|Blog, Current Research, Future Research, Injection, JIA, Medication, Research|

When I first heard of the medication Ondansetron, I couldn’t help but think about how its name sounded like a character from the Transformers movies. While this medication doesn’t fight space aliens or have a special effects budget, it does hold the capacity to TRANSFORM lives. How might you ask?Methotrexate is a [...]

Managing JA through Movement: How Ryan’s Gym Routine Helped Him to Build Physical (and Mental) Health and Lifted His Disease Management to the Next Level

By |October 3rd, 2023|Mental Health, Newly Diagnosed, Physical Activity, School Toolkit|

"Working out and going to the gym helped me regain my physical ability but also my confidence, energy and overall mental wellbeing." - Ryan Dekker, Young Adult Living with JA As someone who grew up with an active lifestyle (and plenty of energy), finding a way to stay active [...]

September 2023

Navigating School + Life with JIA – Jessica’s Story

By |September 6th, 2023|Blog, Ontario, Stories, Toronto|

"I soon began to experience extreme pain in my wrists, which would cause challenges for me whenever I would be at school or would work on school assignments." My name is Jessica Gill. I am from Toronto, Ontario, Canada. I was diagnosed with Juvenile Idiopathic Arthritis at the age of eight years [...]

August 2023

C+F Inventing Room: Reinventing the Injection Experience for Kids and Families Affected by JA and other childhood rheumatic diseases in Canada

By |August 31st, 2023|Advice, Advocacy, Blog, Injection, Medication|

Inspired by the Roald Dahl Charity’s Marvellous Nurse Inventing Rooms, on August 23rd, we hosted our very own C+F Inventing Room to ask the community and together envision what our C+F Injection Coping Kits should include. With the help of medical experts, parents and youth, we dove in and got to work! We started [...]

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