rare disease
Where Are They Now: Zahra’s Story
In this special Rare Disease Month edition of “Where Are They Now”, we caught up with Zahra Alidina. In 2023, Zahra shared what life was like living with an autoinflammatory disease that is so rare it doesn’t even have a name. We’re so honoured to share this update from Zahra below.…
Radiant Resilience: Isla the JDM Warrior
It was fall of 2021 and Isla was 6 years old. Her life was pretty much centred around her unwavering excitement for Halloween and being able to wear her unicorn costume to go trick-or-treating with her best friend, Alice. Over the month of October, we started to notice that she…
#WhyIRun – Annika’s CRMO Journey
Annika hurt her ankle in December 2021. She complained of pain, but we didn’t see any swelling or bruising. We took her to our family doctor, who then sent her for an X-ray. He didn’t see anything from that, so we went home but Annika still complained of pain. In…
Reine Hodroj – Rare Connection with Behçet’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 story took a positive turn when…
Tough as Nails: A Father Reflects on his Two Daughters and Childhood Rheumatic Disease
“We’re very proud of our girls for showing the fortitude needed to not let these diseases define them.” Hello families! My name is Mike Wiens, husband to Jesica and father to two girls, Vanessa 24 yrs old, and Sarah 23 yrs old. We’re happy to call Port Moody, BC our…
My disease is so rare I don’t yet have a diagnosis.
To recognize rare disease day, we want to shine a light on all rare diseases, including the story of Zahra, whose rare autoinflammatory disease is still unknown, despite extensive genetic testing. Rare diseases affect 300 million people worldwide, and many of the 24,000 children in Canada in the pediatric rheumatic…
It’s Not Easy Being Rare: Working Together to Navigate the Challenges of Systemic Autoinflammatory Diseases
It is not easy being rare. Being rare means that there is not a lot of knowledge, research, and treatment options available for youth and families affected by systemic autoinflammatory diseases (SAIDs). And that is exactly what the recently formed Can-SAID advisory group, a branch of Cassie + Friends (C+F), wants to…
Our Family’s Journey with CRMO
Meet Sheila and Jim! They’ve shared their family’s journey with the rare rheumatic disease, CRMO, below. Sheila and Jim live in Qualicum Beach on beautiful Vancouver Island. They have three sons, two of which live with Chronic Recurrent Multifocal Osteomyelitis (CRMO). Nolan was diagnosed with CRMO at the age of…
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.…
“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…
Autoinflammatory vs. Autoimmune – What’s the difference?
Autoinflammatory vs Autoimmune Diseases Coined less than 20 years ago, the word autoinflammatory is often confused with autoimmune—so, what’s the difference? When we think of the word autoimmune, most people understand that it means your body is attacking itself the way it attacks invaders, like bacteria and viruses. These autoimmune responses…