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Spectacular NWT Feature
“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.’”
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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.
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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 at… Read more
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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 best… Read more
Meet The Rare Wanderer (Alexis)
Alexis is a passionate writer, student, patient advocate, and an advocate for diversity and inclusion. She dreams of becoming a genetic counsellor. She loves to travel and wants to explore the world. She also lives with 3 rare, genetic diseases; Congenital Long QT Syndrome Type 5, Solar Urticaria, and Hypermobile Ehlers-Danlos Syndrome but is living her life despite the challenges she faces. In addition, she is bionic, rocking a dual chamber Implantable Cardioverter Defibrillator (ICD) and pacemaker combination device.
The Rare Wanderer 