Name: Alexis Holmgren
Age: 18
Which SADS condition do you have? Long QT Syndrome Type 5
When were you diagnosed? In 2013 at age 12
How are you treated? Beta blocker (Nadolol), Spironolactone, Left Cardiac Sympathetic Denervation (LCSD), and a dual chamber ICD with pacing for bradycardia
How/when were you diagnosed?
I was diagnosed following my mom’s survival of three cardiac arrests and her subsequent diagnosis of LQTS. I underwent a full cardiac screening and my results (especially my stress test where my QTc lengthened significantly in recovery) were indicative of LQTS. Genetic testing came back confirming the diagnosis. Despite this, I had been symptomatic since around the age of 10, having experienced three near-drowning events (one while diving in the ocean, one in the pool after going off the diving board, and one in cold water after attempting the Polar Bear Dip) and numerous fainting events after basketball practice that are now believed to have been caused by LQTS.
What has been the biggest challenge you’ve faced in living with your diagnosis?
One of the biggest challenges I’ve faced living with my diagnosis is the limitations and challenges LQTS has caused in trying to treat my other medical conditions. For instance, I also live with Solar Urticaria, a rare severe and debilitating allergy to ultraviolet light including sunlight, and most treatments that would traditionally be used to treat the condition are on CredibleMeds, posing a high risk of causing arrhythmias due to my LQTS. It is constantly a balancing act of risk versus benefit. The other biggest challenge I have faced thus far living with my diagnosis is the rare complication I ended up with of severe, disabling, chronic nerve pain from my LCSD.
What is one positive thing that has come out of your diagnosis?
One positive thing that has come out of my diagnosis is that living with LQTS and facing people constantly telling me I shouldn’t be allowed to do things I was cleared by my doctor to do because of my heart condition inspired me to become both a patient advocate and an outspoken advocate for diversity and inclusion. As a patient advocate, I admin 3 groups for SADS patients (one for people living specifically with LQTS Type 5 , one for teens living with LQTS and one for people who have had or are going to have LCSD. As an advocate for diversity and inclusion; I have written numerous articles, been a keynote speaker on inclusivity, lead training sessions for leaders on Diversity and Differences, and am a member of the National Diversity and Inclusion Action Group with Girl Guides. I was also selected to bring my advocacy efforts to the national level and discuss the issue of diversity and inclusion at the Canada Youth Summit in Canada’s capital city, Ottawa in May 2019 and at the Experiences Canada Diversity and Inclusion Forum in Toronto in July 2019.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
I would tell someone just diagnosed to educate yourself as much as you can on your condition and to learn to advocate for yourself. You will need to become your own best advocate in medical and non-medical situations as you will come across people who are not educated on your condition and those who spread misinformation. Information (from credible sources) is power!
What are your favorite hobbies and activities?
My favorite hobbies and activities are; Girl Guides, volunteering at my local humane society as a Cat Cuddler and helping to certify therapy dogs, writing, reading, photography, knitting, scrapbooking, journaling, traveling, listening to music (and going to concerts), watching curling, watching Netflix, and my advocacy work as a patient advocate and an advocate for diversity and inclusion.
Want to be featured in the SADS Spotlight? Share your story by answering a few short questions. If you have a longer story to tell, or if you’d like to write about a specific topic, check out our guidelines for writers.