When I was 22, I started training for my first triathlon. A few years later, I had completed over 20 short triathlons and was a few months away from the big day when I would marry my husband, Ockie. I had even competed for Team USA in amateur world triathlon championships.

But then things changed. It was a normal evening at the YMCA, and I had somehow convinced my sister to come swim laps with me (she hates swimming). Two laps into our swim, she passed out in the pool. As the lifeguard and I pulled her out of the pool, she regained consciousness and gasped for air with no recollection of what happened. Others that witnessed what happened thought she may have had a seizure. Many appointments later, a local cardiologist suspected that she may have CPVT and referred her for genetic testing. 

A month or so later, four of the six members of my immediate family had been diagnosed with CPVT – my dad, two sisters, and myself. I have another sister, a fraternal twin, who does not have it. We were all so physically active growing up and could not understand how this condition had only manifested now. 

On top of this, my CPVT diagnosis was especially challenging for me. I also struggle with advanced stage 4 endometriosis and have had three surgeries since the age of 19 to alleviate the painful lesions and associated symptoms. I initially began exercising so regularly as part of my treatment plan, which helped my symptoms. After my CPVT diagnosis, I felt as though I would never feel like my happy, healthy self again. 

But then our local cardiologist referred us to Dr. Michael Ackerman at the Mayo Clinic in Rochester, MN. He and his team have given us all so much hope and the confidence to continue doing what we love despite what seems like a diagnosis of limitations. 

With encouragement and support from my sweet husband, I was able to continue racing in a few triathlons with him as my designated swimmer (since swimming is known to trigger CPVT events). We’ve also become avid golfers and enjoy low key days on the course as a new form of exercise. Our family has become closer since all of our diagnoses, and we rely on our faith to carry us through the difficult times.

Today, I take nadolol once daily and flecainide twice daily. I also underwent LCSD (left cardiac sympathetic denervation) at the incredible Mayo Clinic Rochester and visit there annually. I am still able to run or bike almost every day, but carefully monitor my heart rate. I now satisfy my competitive nature by submitting homebrew beers to competitions and by attempting (and usually failing) to beat my husband at golf. CPVT might alter your path, but it can never change who you are. I want to encourage other SADS patients to find their outlet, be themselves, and do what you love. Make friends with your condition instead of seeing it as the enemy within you.

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.  

Hi! My name is Nicholas Arruda. I am 15 years old and I am from Johnston, Rhode Island. I live with my dad, Raymond and my mom, Julie. I have a 13 year old sister named Emily and a one year old Yorkshire Terrier named Chloe.

I have CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia). When I was 5 years old running around my grandfather’s office with my then 3 year old sister Emily, I collapsed on the floor. My Uncle Pete called 911 and my uncle and my dad did CPR on me. I woke up before the ambulance arrived. I was brought to the hospital and stayed there for a few days. At first, they thought I might have had a seizure, but then they realized it was my heart. I started seeing Dr. Sara Ford from the Pediatric Heart Center in Providence, RI. I was told I had ectopic atrial tachycardia. I was put on a beta blocker. I did not have any other episodes for 6 years.

When I turned 11, we decided to take me off the beta blocker because I had no symptoms. My parents asked for me to have a stress test to make sure I was ok without the beta blocker. I was on the treadmill for two minutes when my heart rate went up to 300 beats per minute. They stopped me immediately and realized I had to be on a beta blocker and add another medicine called flecainide. I had to be admitted into Hasbro Children’s Hospital in order to start flecainide. I also have a cardiologist name Dr. John Triedman at Boston Children’s Hospital. I was genetically tested and found out I have CPVT. My parents and sister were also tested and they do NOT have it.

Since then I have had two heart monitors implanted and I even went to the Mayo Clinic in Minnesota to have Left Cardiac Sympathetic Denervation (LCSD). Currently I am still taking 40 mg of nadolol two times a day and 100 mg of flecainide two times a day. I am not allowed to compete in any competitive sports and I have to take my AED with me when we know I am going to be a bit more active. This is one of the biggest challenges I have had. It stinks that I always have be careful of how active I am. 

There are MANY positive things that have come out of diagnosis. I am a big New England Patriot’s fan and I was able to get a Make-A-Wish in the summer of 2016. I chose to meet Tom Brady. My family and I got to meet him and take a picture. I also got a signed jersey and picture. We even used our picture with Tom Brady for our Christmas card that year! I also was able to get seats to see Maroon Five by Do It For The Love Wish Grant. I was able to work at Rob Gronkowski’s Sports camp this past summer and Julian Edelman’s Sports camp too. I was able to get pictures with both of them. I also was able to meet Patrice Bergeron from the Boston Bruins at a Make-A-Wish Event. 

I love to watch football. We have Patriot’s season tickets so I always go to a few games each year. I currently am a manager of my high school’s Varsity football team. I go to Lasalle Academy in Providence, Rhode Island. I am currently a Boy Scout with the Life Rank in Troop 1 North Scituate, Rhode Island. I like to spend my spare time playing X-Box, watching YouTube videos, and spending time with my family.

We have also attended three SADS Conferences. We went to San Diego, Toronto, and this last one in Atlanta. It was a great experience for myself, my sister, and my parents.

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Name: Lila Wolfram
Age: 4
When was your SCA? October 2015 (8 months old)
Which SADS condition do you have? Idiopathic Ventricular Tachycardia
How are you treated? Lila has a Medtronic Evera ICD. She had a left side sympathetic denervation (LCSD) performed at 10 months old. She currently takes Amiodarone and Nadolol.

Can you tell us about your Sudden Cardiac Arrest (SCA)?
Lila was 8 months old when she had a SCA at home. My husband (Jim) and I woke up to hear her crying in her crib. When we got to her she was having trouble breathing and was grayish. After another minute or two, she went limp and stopped breathing. We called 911 and Jim started doing CPR. EMTs and State Police arrived. She was shocked 2 times with an AED, and another time on the way to the hospital. Her heart rate was over 330 bpm by the time she was at the hospital and hooked up to a monitor. She was transferred to the Children’s Hospital of Philadelphia (CHOP) and had an ICD implanted the following week.
About 6 weeks after her ICD was implanted Lila had a “VT storm” with many, many shocks from her device. After this she had the LCSD performed at the Mayo Clinic . All her genetic tests have been negative to date.

Did you have any warning signs of having a SADS condition before your SCA? 
Not a single warning sign!!! No family history either.

What has been the biggest challenge you’ve faced as a SCA survivor and/or living with your diagnosis? 
The biggest challenge that I have faced as Lila’s parent is learning to trust her device to do its job and to learn to live with the uncertainty that comes with being the caregiver to a young child with a condition. She was so young she could not tell me how she was feeling. Living with the constant worry of her being shocked.

What is one positive thing that has come out of your SCA/diagnosis?  I have met some absolutely amazing people during this “journey” (I hate calling it that) with Lila. I have also learned how to advocate better for Lila, my other kids, and myself. Last month I was invited to speak at a quarterly meeting at Medtronic about Lila – something I never thought I would be able to do. This all has given me a little more confidence in myself as a parent.

What encouragement or advice would you give someone who has just survived a SCA or been diagnosed with your condition?
Join a support group and try to find people to connect with that understand what it is you are dealing with. It doesn’t have to be someone with the exact same condition. In my case, I learned so much from adult patients with devices – as well as gained support from other moms of young children with devices. Both equally valuable! And so important to not feel alone.

What does your day-to-day life look like? 
Lila is in her second year of preschool right now, and LOVES it! She is living her life as basically a normal kid! And I’m so proud that her and I both have gotten to the point where this is possible!

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. 

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.