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 [...]

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 [...]

Mental Health Workgroup

By |October 17th, 2023|Advocacy, Mental Health, Mental Health (For Youth), Research|

National Pediatric Rheumatology Mental Health Workgroup Cassie + Friends has led the formation of a new workgroup on Pediatric Rheumatology Mental Health to improve mental health care and outcomes for children with rheumatologic diseases. The goal of this Mental Health Workgroup is to develop strategies to improve research, care, and outcomes about mental [...]

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 [...]

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