Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor about anything closer, she told me there was nothing. I had essentially given up hope that I would ever have the chance to attend heart camp when I turned 18, shortly after having LCSD and my ICD implanted at the Mayo Clinic in Minnesota. 

However, I knew from following Facebook posts that one of our close heart friends (my heart sister, Michele) had sent her daughter to Camp Heartbeat in Virginia, close to where they live and she had a blast. When I researched the camp, I found out they accepted campers up to age 19. My mom and I then asked Michele if I could stay with her until she dropped both myself and her daughter off at camp since her daughter would also be attending. She told us absolutely, yes and thus the planning began. 

On June 16, I flew out to IAD (Washington-Dulles). Though the journey was far from simple or direct. A missed connection and being stranded in Atlanta, Georgia for hours on my first international flight on my own did not stop me. I stayed with Michele and her family for a week before heart camp. The entire time was filled with priceless adventures and memories I will treasure forever. It was an incredible feeling connecting with a family whose relationship and experiences with LQTS are so similar to my own. They live life and are not bound by fear or apprehension. In fact, they live more because of LQTS just like I do. During the trip, we visited caverns together, toured Washington DC, visited the Smithsonian Museum of Natural History, met their horses and chickens, toured a winery, and caught fireflies (for the very first time for me since we do not have fireflies where I live).

I will remember the way we hysterically laughed as Michele’s husband drove the golf cart down the golf course in the darkness of nightfall in their gated community after we caught the fireflies down by the river forever. The sketchy engine was incredibly noisy and leaked gasoline, so even our hair and skin smelt of gasoline afterward, yet we could not stop smiling and laughing. During our time together, we laughed, cried, and bonded. We immediately felt an incredible sense of connection that only intensified as the week progressed.

From June 22-27, I had my dream of attending heart camp come true at Camp Heartbeat in Virginia. The entire experience could only be summed up as incredible. The unspoken sense of community and connection felt by everyone was incredibly moving, knowing that we all understood more than most others could about the challenges and triumphs of living life with varying heart conditions. Although our heart conditions were different, we face many of the same obstacles. It was priceless to be with others who shared that sense of understanding. Everything was taken care of. I did not have to worry about anything. I got to be a kid for a week and my only major responsibility was getting to my next activity. Seeing the scars and hearing the stories from other kids made me feel so much less alone. I finally wasn’t weird or strange. I was no longer “the girl with the heart condition.” I was just Alexis. I was me. 

Throughout the week, I stepped out of my comfort zone and participated in a variety of fun activities. I ribbon danced. I did yoga. I painted, made bracelets, and made a clay strand of DNA. 

I laughed as we played Apples to Apples and UNO in the game room. We even had a spa night where I got to have my nails done. We sang along to campfire songs well into the dark of night by the lakeside and made s’mores. I also had the opportunity to meet the very first girl my age in person living with LQTS. She also has a pacemaker, while I have a dual chamber ICD/pacemaker which just added to the sense of commonality.

Even when a severe thunderstorm approached with gusts of 60 mph wind and we couldn’t leave our dorms, we didn’t let that stop our fun. As the rain poured outside and the wind howled taking the power out for hours we played UNO in the pitch black, chatted, and watched the storm. Once the storm calmed but the power was still out, we had the opportunity to participate in a doctor talk where we could ask the cardiologists any questions on our mind relating to our heart conditions or health care. The cardiologist emphasized an important point that I passionately believe in, simply put, “Live your life.” In addition, the doctor encouraged us all to take control of our own healthcare and ask any questions we have for our doctors ourselves so that we form a solid understanding of our own conditions.

A standout moment of the week for me was when we had breakout sessions split up according to age where we got to share both the challenges and the positives of living with heart conditions. Despite our heart conditions varying widely and some having electrical conditions and others having structural heart conditions, we shared many of the same difficulties and positive parts that come from our experiences with our conditions in high school. Many of us struggle with missing out on things and always having to catch up in school and life because of our health. However, on the other hand, having heart conditions has helped us to appreciate the little things. It made me less fearful. I live my life now instead of just being alive. I even traveled over 4,000 km from home to be at camp in a different country away from my family. It helps us to focus on what we can do rather than what we cannot. It helps us to realize our own inner strength and to be ourselves. It was also emphasized that we should remember that our goals are our own. They are not anyone else’s. Every day we wake up we are getting closer to our goals, not further away even though it may be slower than we would like. That was a powerful takeaway for me.

Throughout the week, we competed in events earning points for our randomly assigned teams for the Camp Heartbeat Olympics of Team Killer Whales and Team Great White Sharks. I competed in trivial pursuit and helped to make our team flag that was used in the Olympics. There was also a camp talent show that I watched with delight and I enjoyed cheering on the other campers.

I was reminded what a small world we all live in near the end of camp when the electrophysiologists switched off and Michele’s daughter’s pediatric EP came to camp to supervise. When we met, she asked me who my EP was. I told her, and she actually knew my EP well. She used to work in Canada, in the province to the west of me and met my EP at several conferences. She had even stayed in her house. She told me I had to say hi to her, so we took a photo together and sent it to my pediatric EP who promptly emailed me back filled with excitement. It was really neat that the EP looking after my little heart sister in another country thousands of kilometers away knows my own pediatric EP well.

At the end of camp, when all of the parents came each camper was presented with their own custom award. I was presented with the “Oh Canada… Award” for never complaining even when things were tough, being flexible, and being just as nice as you’d expect a Canadian to be. All week I answered random questions about Canada from stereotypes to the capital city, to what stores and fast food restaurants we have. The award fit me perfectly. I am incredibly glad I was able to have this experience. I truly felt as though I belonged and I will carry the memories I gained from this trip with me forever. Heart camp was an experience I did not realize I needed until I was already there. As an advocate in patient communities, I did not realize how truly alone I felt until I was surrounded by people who completely understood what I had been through and am going through. I also gained a second mom and a second family through Michele, which I am also eternally grateful for. The bond we share because of our similar experiences living with LQTS is something that surpasses all words and emotions. Both places felt like a home away from home even though I was so far away. 

If you are a kid or a teen with a SADS condition reading this, consider going to heart camp especially if you are struggling with your condition or feel alone. If you are the parent of a child with a SADS condition, consider sending your child to heart camp. I was safe the entire time. Medications were supervised. There were AEDs on site. There was a medical magnet that could have been used to disable ICDs. There were even device programmers on site that could have read pacemakers, ICDs, and loop recorders. Multiple doctors were at camp around the clock fully equipped to deal with any cardiac emergency. I never felt scared. The experiences I had will help me going forward in dealing with my condition. I am so glad I went when I had the chance.

Would you like to share your family’s experience with a SADS condition?  
Please see our Guidelines For Writers and contact us as SADSblog@sads.org.

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.

When we heard the 2017 SADS Conference was going to be held in Canada, it seemed like a sign for my mom and me as Canadians. In the past, we had not been able to get insurance to travel outside of the country after her sudden cardiac arrest 5 years prior. Since it was in Canada, we no longer had to worry about getting out of country travel insurance to go. Even so, it seemed like a totally crazy idea at the time, but my mom told me she had a feeling we needed to be there. So, my mom and I flew approximately 3,000 km from the western province of Alberta to the other side of the country to Toronto, Ontario to attend the conference. Since I was diagnosed with Long QT Syndrome when I was 12, I had always wanted to attend the SADS conference. I wanted to meet other teens and people my age living with Long QT. It was a maybe, someday, sort of dream for me. In the years prior, I had diligently followed the conference posts on Facebook support groups and on Twitter. Even so, seeing posts in my news feed is completely different from actually being in the room with the experts.

The other major draw for attending the conference was when we found out Dr. Ackerman who is one of the world’s top experts in LQTS, was doing off the books, free 15-minute appointments with patients. That sealed the deal. For the past 5 years, every time my dad bought a lottery ticket he would joke that the first thing he would do with the money would be to send my mom and me down to the Mayo Clinic to see Dr. Ackerman. That dream became reality for me without any lottery win required.

In the years prior to the conference, I had been passed from specialist to specialist in the medical system. I had been told I am too medically complex to treat since Long QT is not my only diagnosis. I live with two other rare diseases believed to have a genetic component and several other medical diagnoses. I have Solar Urticaria which is a severe, difficult to treat allergy to ultraviolet light including sunlight, black light, and some visible light and a joint disorder that causes hypermobility and chronic pain. I had been told there was nothing medical science could do to help me. I had been told to put plywood on the basement windows, move down there, and avoid all sun exposure. I had gone through years of trying every single treatment available for my medical conditions that was not on the drugs to avoid list and none of them working.

How much can one learn in 15 minutes? By the time our appointment came early Saturday evening, I wasn’t sure. Others that had already had their 15-minute appointments had said that the recommendations were often not specific and he told them to come down to the Mayo Clinic for further evaluation. That is what I expected, and that would have been alright. I had already had the opportunity to meet another teen living with Long QT and his mom who had travelled all the way from Germany. We also had been able to meet many of my mom’s online LQTS friends in person. I had been able to question Dr. Ackerman in the fireside chat about whether the KCNE1 gene is disease-causing for Long QT. He called LQTS5, my type of Long QT, a “rock solid disease-causing gene”. I had gotten to hold a model of the loop recorder that had been in my body for three years, my mom’s S-ICD, and other ICD models for the first time. All of those experiences had already made the conference priceless for me.

My mom and I were called into a small boardroom for our appointment with Dr. Ackerman. The first question he asked us was “What do you want to get out of this meeting?”. We answered that we needed a way to be able to treat my entire medical picture. In the following 14 minutes, I was blown away. He came up with a four-step individually tailored treatment plan just for me. He looked at my mom and told her that the first step he would take if I was his daughter would be for me to undergo a Left Cardiac Sympathetic Denervation surgery. Everything faded out at that point. I froze. The next several minutes were a blur until my mom asked me what I thought of Dr. Ackerman’s plan. When I asked what I had missed, I was told that I also needed an ICD. Then, the third step of his plan would be to take me off of my high dose of beta blockers so that I would not have to endure their side effects anymore. Then, I would be able to try other treatments to treat my other medical conditions. If I received shocks, we could reevaluate. He told me that my EP had been seriously under-treating me and that I would be dead in five years without these major changes to my treatment plan.

As we were about to walk out, my mom showed him our genetic testing results for a “likely disease-causing” mutation for LQTS type 5 and asked if this mutation was the reason we have Long QT. He examined the report and told us without a doubt, yes. He called it the “smoking gun”. Because of the location of the mutation on the gene, that it is not seen in healthy people, it results in an important amino acid substitution, and other factors he declared it “definitely disease-causing”. My mom was extremely reassured that we definitely know the cause of Long QT in our family.

After the appointment, the only emotion I could feel was shock (pun intended) that I needed both a LCSD and an ICD. However, I was incredibly thankful that we now had a plan not just to keep me alive but to also let me live. With this plan, I would be given the chance to have quality of life. I didn’t tell anyone other than the people at the conference for a few weeks after I returned home. I needed time to process what this plan meant. However, I believe there was no better place for me to be when I received this news. Instead of being alone and scared in a doctor’s office at home, I was surrounded by people who got it. There was an entire room of people who despite having circumstances unique to them, all understood what it meant to be given this news only a few feet away.

After the news, I met a rocket scientist from Alberta who told me all about her experiences living with an ICD in the Alberta medical system. She even gave me a recommendation for an EP who later became my new adult EP when I aged out of pediatrics after my surgeries. I met a young woman who underwent LCSD at the Mayo Clinic as a teenager and we had an extremely helpful discussion about what to expect, scarring, and side effects over dinner. Several people even let me touch their ICDs so I would know what mine would feel like actually implanted in my body. The greatest irony of all, however, is that my mom decided not to attend the session on LCSD earlier that morning because she thought neither of us would ever have one since it’s so difficult to get in Canada. She still regrets that.

I happened to have an appointment with my EP a week after I came home from the conference. She was on the edge of her seat (literally) to hear what Dr. Ackerman had to say. I was nervous about how she might react to being told that she had been under-treating me. Despite this, she took his recommendations very seriously and began the application process for out of country funding to go to the Mayo Clinic for the Left Cardiac Sympathetic Denervation. She had talked to the top hospitals across the country in Canada who all informed her that they had only performed single digit numbers of these surgeries and would not do them again. So, since the Mayo Clinic had the most experience by far and that was where Dr. Ackerman worked, she decided to send me there.

What followed was eight months of waiting for the out of country funding application to be evaluated, rebooking the appointments at the Mayo Clinic, denials, requests for more information, and heartbreak. In January, I received a letter in the mail that I had been temporarily denied until they received more information. In March, I had to postpone again. Finally, on April 25, 2018, eight months after the SADS Conference, my out of country funding application was approved. After everything, we finally booked the dates to officially go to the Mayo Clinic. Since I had waited so long and been told “no” and “not yet” so many times, it never felt real to me. None of it was real until June 24 at 5 am when my dad dropped us off at the airport to catch our plane to Minnesota.”