The Rare Among the Rare
When I was 12 years old, following my mom’s sudden cardiac arrests, I was diagnosed with a rare, genetic sudden arrhythmia death syndrome called Congenital Long QT Syndrome Type 5.…
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The Rare Among the Rare
Alexis Holmgren is a teen patient advocate and an advocate for diversity and inclusion from Canada. She lives with 3 rare diseases (Congenital Long QT Syndrome Type 5, Solar Urticaria, and Hypermobile Ehlers-Danlos Syndrome) and an implanted defibrillator/pacemaker combination device. She aspires to become a genetic counsellor. In her spare time, she is a Girl Guide, writer, volunteer, and a board member in her city. She also enjoys scrapbooking, knitting, reading, photography, traveling, watching curling, and listening to music. She has previously been published on The Mighty, The SADS Foundation Blog, and in numerous Girl Guides of Canada publications.
