Rare Disease Stories

Daniela is an 18-year-old youth living with Systemic Lupus Erythematosus. In this piece, she shares her journey to diagnosis, the realities of growing up with a chronic illness, and how her experiences have shaped her passion for advocacy and helping others navigating childhood-onset rheumatic disease.

For most of my life, I’ve had Morphea. Starting as a red mark on my chin as ayoung child, it eventually turned darker and over the years, spread to areas onmy forehead, and neck. Morphea, also known as localized Scleroderma, is an auto immune disease thatcauses hardened and darkened patches…

In my 7 years of living with Ankylosing Spondylitis since the age of 21, I’ve had to teach a lot of people quite a few things about my illness. It’s a relatively unheard-of form of arthritis in day-to-day life. Most people have heard of Rheumatoid Arthritis, but not usually Ankylosing…

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…

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…

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…

Sophie Finn is a student, a C+F Youth Ambassador, a soccer coach, and a JDM warrior. This is her story. My story began in Grade 7, when I started to experience unexplained pain in my lower back. At the time, I was playing soccer and my goal was to make…

To recognize Juvenile Arthritis Awareness month, we’re highlighting stories from the youth in our community: their diagnosis, their journeys, what they’ve learned, and most importantly, their advice. At Cassie + Friends, we believe that all kids deserve to live pain-free. In Canada, 24,000 children, teens and their families will be…

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…

Hello there! My name is Emily Bessey. I am 19 years old and live in Cole Harbour, Nova Scotia. My journey with JIA and TMJ started way back in 2009 when I was just 6 years old. I would go to school limping, hardly able to walk, but return home…

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…

I don’t know if there can be a ‘typical’ journey for a young child who receives a Juvenile Arthritis diagnosis. But this is Linden’s story so far. When Linden got sick at 18 months old, we thought it was just a cold. But then came an unusual rash and his…