The Rare Wanderer

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.’”

Last month (October 2020), I was absolutely delighted to receive an email from Spectacular NWT (the Northwest Territories Tourism Board) about an incredible opportunity. They had noticed my posts about my high school graduation trip in January 2020 and wanted to do a featured interview about my experience for their website. I was so excited and accepted the interview with no hesitation. Amazingly, I had used their website to plan many aspects of the Northwest Territories (Yellowknife) leg of my trip. Today, the story was published and I’m so proud of how it came together and to now be able to share my story.

I could not have possibly enjoyed my trip more. The experience was mesmerizing and far exceeded any expectations I had. I have loved the Arctic from the time I was a young child and this trip only solidified that love more for me. I hope to return to Canada’s North one day and hopefully see Whitehorse (again), Dawson City, Iqaluit, and Yellowknife (again).

Merely thinking of the trip or seeing photos is a sure way to bring a huge smile to my face, even on the especially challenging days with my health. I will always carry the special, life-changing memories I made on this trip with me.

Patient Journey Feature: LQT Theraputics

Click Here To Read My Story

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 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 risk or your risk is low, doesn’t mean that your decisions can’t have potentially major consequences for those around you. You likely know more higher risk people and immunocompromised people than you think. We are the vulnerable and we need your help to protect ourselves. This is not over-dramatic for us. This is life and death.

Think of my mom who is a heart patient with kidney disease, autoimmune disease, and other health conditions. Our specific heart condition (Long QT Syndrome) doesn’t make us higher risk of contracting the virus but it will make any potential treatments for COVID-19 higher risk and potentially life-threatening, requiring hospitalization (assuming there are hospital beds available).

My mom and I during different times, before I left on a trip in 2019

Think of my grandma, who is in long-term care (attached to the hospital). She has terminal cancer and at over 80 years old, this virus has a high risk of severe and/or fatal consequences for her. We can’t imagine losing her now to a virus that could’ve been preventable rather than the cancer or dementia that are killing her day by day.

Taking a selfie with my grandma during a visit to her long-term care home in October 2019

Think of me. I may look young and healthy but I’m also a heart patient with autoimmune diseases. I’m immunocompromised and medically complex. I have tons of scar tissue on my lungs (to the point that during one of my heart surgeries, some of the scar tissue had to be surgically removed to even collapse my lung to be able to perform the operation), and a history of pneumonia and bronchitis (many, many times). I pick up everything that passes through and get sick essentially every time I go out in public. I also have Ehlers-Danlos Syndrome, a connective tissue disorder that affects nearly every part of my body, among other health issues.

Do your part to help through social distancing. That means even though schools (where I live, in Alberta, Canada) are closed, this is not the time to take your family out to theatres or shopping malls. Please stay home unless it is absolutely necessary to do otherwise. I am scared but not because of “fear-mongering” or media. I’m scared that this will be underestimated and people will continue to nonchalantly go about their day-to-day lives, needlessly exposing people like my family to a virus that could be incredibly severe for us.

Avoid non-essential travel. This is coming from a traveller. I understand the love for exploring and the want to travel, however this is not the time for any non-essential trips.

If you are directed to self-isolate or quarantine, please do so, immediately.

If you are showing symptoms, do not go out in public. Do not go to work.

Follow the advice of your health authorities.

This is why the borders are closed. This is why schools are closed. This is why the city-owned facilities are closed (like pools). This is why so many events have been cancelled, to protect the vulnerable like me.

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 way I can.

I live with a trio of rare, genetic diseases; Congenital Long QT Syndrome Type 5 (Sudden Arrhythmia Death Syndrome), Solar Urticaria, and Hypermobile Ehlers-Danlos Syndrome.

Long QT Syndrome places me at high risk of sudden cardiac arrest and death. It can also cause fainting and/or seizures. For this, I take medication twice daily, had an ultra specialized heart surgery called Left Cardiac Sympathetic Denervation that removed a large portion of my sympathetic nerve chain (leading to the rare complication of severe 24/7 Post-Surgical Neuropathic Pain), and have an ICD (implanted defibrillator) and pacemaker device implanted.

Solar Urticaria is a potentially life-threatening (anaphylactic) allergy to ultraviolet light, including sunlight. This requires me to protect myself by covering head to toe in UV protective clothing, avoiding all sunlight, and carrying EpiPens. I react through clouds, all year, and through windows. The severe allergy has been treatment-resistant and causes; hives, pain, itching, digestive issues, nausea, severe fatigue (I can sleep for nearly 24 hours after exposure), and lightheadedness.

Hypermobile Ehlers-Danlos Syndrome is a connective tissue disorder impacting all of my joints. It causes severe chronic joint pain, easy injuries, frequent falls, fragile and sensitive skin, dislocations, TMJ (jaw) problems, and more. I walk with leg braces and a cane. I use a wheelchair or mobility scooter for longer distances.

I may be rare, but my rare diseases do not have me. I don’t just want to survive. I want to thrive.