“As Alexis Holmgren stared up at the Northern Lights that danced miles above her outside Yellowknife, she was suddenly overwhelmed by everything she had overcome so far in her young life to get there. ‘It seems funny to think that colours in the sky can be so meaningful, but it definitely was for me, I was just standing there in the cold.. and I could see the beauty of the sky. It was honestly something that, at one point, I wasn’t sure if I’d live to see.’”
Tag Archives: rare disease
Patient Journey Feature: LQT Theraputics
“I always like to say that I may have Long QT, but Long QT does not and will not ever have me”. I refuse to be defined by Long QT or any of my other health challenges. Despite everything I’ve been through, my life motto is that I want to live, truly live my life, not just survive.
The Novel Coronavirus: Through the Eyes of a Vulnerable Rare Disease Patient
For many people, this novel Coronavirus will turn out to be comparable to the regular common cold or flu. The majority of cases are mild in young, otherwise healthy people. However, please think of people like my family when you make your decisions in the coming days. Just because you are not the one atContinue reading “The Novel Coronavirus: Through the Eyes of a Vulnerable Rare Disease Patient”
Behind the Rare (About Me)
I am a passionate writer, student, Girl Guide, volunteer, advocate for diversity and inclusion, patient advocate, and a lover of travel. I dream of becoming a genetic counsellor. I also happen to have 3 rare diseases. I am the rare wanderer. I refuse to let my conditions stop me from living my life the bestContinue reading “Behind the Rare (About Me)”
The Rare Wanderer 