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Stories

Every young person’s journey with rheumatic disease is different. These stories share the lived experiences of youth who are navigating challenges, building confidence, and finding their voice.

Through connection, support, and community, these young people are showing what’s possible — and helping others feel less alone along the way.

From Clips to Cause: How one Windsor youth is giving back to the rheumatic disease community.

Hi, my name is Savannah and I am a second-year university student studying kinesiology and living in Windsor, Ontario. I was diagnosed in grade school with Juvenile Idiopathic Arthritis (JIA). A while ago, a member of my care team suggested I google Cassie + Friends to learn about the programs…

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Gauri’s Story: MAS and JIA

Macrophage Activation Syndrome (MAS) is severe inflammation of the immune system which can be associated with rheumatologic conditions such as Juvenile Idiopathic Arthritis (JIA). I was diagnosed with both conditions in October 2010.  My name is Gauri Raj and I am currently 21 years old. When I was 10 years…

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The Story Behind the Session Putting on Your Life Jacket: Self-care for Caregivers, Parenting a Child with Chronic Disease, and more!

Parenting is joyful, frustrating, rewarding and exhausting. Parenting a child with a chronic disease gives you a double dose of it all; you face challenges most parents never dream of. You juggle doctors, therapists, hospitals, insurance companies, pharmacies and the list goes on. Then there are the emotional and behavioural…

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Lupus: What is it and how can you show your support this #LupusAwarenessMonth

My name is Maryse Hendi, I am 18 years old, and I was diagnosed with Systemic Lupus Erythematosus (SLE) when I was 10 years old.  What is SLE? More commonly known as Lupus, it is a disease in which the immune system is hyperactive and not only attacks disease-causing pathogens,…

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Oliver’s Diagnostic Journey: Periodic Fever Syndromes

Meet Oliver! A vibrant young boy with autoinflammatory disease living in Williams Lake, BC! Oliver has always been the type of child that brings joy to everyone around him. We couldn’t go to the grocery store without the smiling baby drawing everyone near. His first year of life was good.…

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Our Story: A Teen and Her Mom on Growing Up with JIA

Meet Amy and Abby Mazzone – a mom and daughter duo who’ve been fighting JIA together, along with their family, for 12 years. As with many in our community, Methotrexate has played an important, yet, challenging role in their journey to find relief from pain and allow Abby to be…

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The Faces of Rare #RareDiseaseDay2021

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…

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“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…

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Meet Mackenzie: JA Won’t Stop Me!

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…

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Manahil’s Rheumatic Disease Journey

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…

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JIA My Way: How one teen is taking charge of her arthritis

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…

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Morgan’s move to adult JIA care

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…

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