When being normal hurts – Stages of Grief in Chronic pain kids.

This week, with it being back to school, I have found myself talking to several patients and parent caregivers of individuals with chronic disease about this transition. With each new school year, you can hear the excitement buzzing around on the school yard or on social media of all the kids heading back, excited to […]

When your label is a Question Mark : When ‘Undifferentiated’ is part of your diagnosis.

The term undifferentiated means : not divided or able to be divided into different elements, types, etc. My 7-year-old little boy has an undifferentiated autoinflammatory disease, he has Crohn’s, interstitial lung disease, has had macrophage activation syndrome, and what looks like systemic JIA. He is currently on treatment and is functioning very well but his […]

Can a story change our healthcare system? Using narrative to promote change

The other day at the dinner table Daniel thought it would be fun to count the number of doctors that follow him. As we went through the list of clinics and the doctors between two hospitals and other clinics, we calculated somewhere between 12-17 doctors that are apart of the ‘conversation’ of his disease. This […]

Autoinflammatory Mom – Living with a chronically aching heart.

I think the memory of the moment you become a parent is one that sticks with us forever. No matter who you are, the birth of your child is one that changes you. I remember Daniel’s birth so vividly: it wasn’t peaceful or serene—it was hard and terrifying. Oddly, before we entered into this crazy […]

How do you talk to your ‘healthy’ child about her sibling’s autoinflammatory disease?

I’ve often heard it said, “chronic disease affects the whole family,” and I agree that this is true. Each family member plays a role in how we support our child with a rare autoinflammatory disease. But what about young siblings? I remember vividly the moment we found out we were pregnant again with our second […]

Genetics – Our Mutant Superhero

X- MEN When Daniel was a little boy, he used to describe his illness as his fireball. If anyone asked why, he would tell them that it felt like burning inside his body. This description birthed a story that helped him to embrace his body’s uniqueness, and has since developed in him an amazing fascination […]

Learning to speak the language—Why patient parents are an asset to the medical community.

I remember one of our first appointments back to hospital after a number months: sitting in a room, waiting to speak to my son’s doctor and glancing over notes on my phone as I frantically texted my husband to confirm what a number of words meant. Words like eosinophil, ferritin, macrophages and IL inhibitors. I […]

Why am I a rare autoinflammatory disease advocate?

Why do I advocate? This is a question that I have to keep coming back to. The definition of the word advocate is “a person who publicly supports or recommends a particular cause or policy.” I have had people tell me that the word advocate is not a commonly used word and isn’t something that […]

Autoinflammatory Mom: A Letter to my former self

For anyone who has experienced the trauma of a natural disaster, I can imagine that the moment when it’s over and you look up at your world in shambles is a lot like how we felt after our child’s first hospital admission. I remember our trip to Sick Kids hospital with our son like it […]

When pain is an indicator

As a caregiver to a chronically ill child with a rare autoinflammatory disease, I find I also have chronic behaviors. Daniel often teases me about being an expert in him (which in all seriousness isn’t wrong). But after six years of living on this journey with him, the trauma of almost losing him early on […]