- Inviting our kids to their doctors’ appointments
by Chris Kinchlea
An interesting thing happened at my son’s last hospital appointment. It’s important to know that my eight-year-old isn’t like all eight-year olds; he’s been in and out of hospital since he was born and by speaking with him, you would know quickly that its an environment that he feels comfortable in.
- Can a story change our healthcare system? Using narrative to promote change
by Chris Kinchlea
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.
- Autoinflammatory mom – Living with a chronically aching heart.
by Chris Kinchlea
I think the memory of the moment you become a parent is one that sticks with us forever. No matter who you […]
- How do you talk to your ‘healthy’ child about her sibling’s autoinflammatory disease?
by Chris Kinchlea
I’ve often heard it said, “chronic disease affects the whole family,” and I agree that this is true. Each family member plays […]
- Learning to speak the language—Why patient parents are an asset to the medical community.
by Chris Kinchlea
I remember one of our first appointments back to hospital after a number months: sitting in a room, waiting to speak to […]
- Why am I a rare autoinflammatory disease advocate?
by Chris Kinchlea
Why do I advocate? This is a question that I have to keep coming back to. The definition of the word advocate […]
- Autoinflammatory Mom: A Letter to my former self
by Chris Kinchlea
For anyone who has experienced the trauma of a natural disaster, I can imagine that the moment when it’s over and you […]
- When pain is an indicator
by Chris Kinchlea
As a caregiver to a chronically ill child with a rare autoinflammatory disease, I find I also have chronic behaviors. Daniel often […]
- How my son’s fever set our world on fire
by Chris Kinchlea
“My son has a rare undiagnosed autoinflammatory disease, which means he has recurring fevers, rashes, arthritis, interstitial lung disease, and a life-threatening […]