To have the opportunity to share the most comprehensive, vulnerable, and detailed article I have written to date about my journey living with Congenital Long QT Syndrome Type 5 (my rare genetic heart condition that places me at high risk of sudden cardiac arrest) was an incredibly special experience. I am extremely excited that my story is out there to help fellow patients feel less alone, and also to spread awareness of what it is like living with Long QT to those without the disorder.
The story takes the reader through my complete journey over the past 8 years. From being diagnosed at the age of 12 after my mom had 3 sudden cardiac arrests from Long QT, to losing my aunt to Long QT, to having 6 heart surgeries, to being told I’d die within 5 years when I was 17 if I didn’t have two surgeries (one very specialized that isn’t even offered in Canada, and another to have an internal defibrillator/pacemaker implanted), to facing complications, to dealing with my other health challenges, and more.
As I shared in the article, “I always like to say that I may have Long QT, but Long QT does not and will not ever have me”. I am me first. 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. That is what inspired me to start The Rare Wanderer blog and Instagram to share my experiences, and to really dive head-first into travelling as something that is meaningful to me and as something that brings me true joy.
The Rare Wanderer 