Name: Dave Whelan
Age: 57
When was your SCA? Feb 10, 2012
Which SADS condition do you have? Brugada Syndrome
How are you treated?  ICD and regular cardiology follow up

Can you tell us about your SCA?     
My SCA occurred while working on a remote mine site in the Pilbara area of outback Western Australia. I was resuscitated and revived, after 23 minutes, by the dedicated work of the onsite Mine Emergency response crew. I was then transported 100km by road to the nearest medical facility where I regained consciousness about 5hrs later. Over the next hour I was further stabilized before being transported another 100km to an airport and flown 600km to the nearest major hospital. Upon arrival I was fully conscious, and apart from a few broken ribs, feeling remarkably well.

Did you have any warning signs of having a SADS condition before your SCA? 
Yes. I have suffered with unexplained syncope and seizure type events suspected to be vasovagal origin all my life. Medical investigation in the 60’s and 70’s provided no answers so I just lived with it. Collapsing on the floor was not an uncommon occurrence for me.

What has been the biggest challenge you’ve faced as a SCA survivor and/or living with your diagnosis?   
It’s not easy when you open your eyes to be told you died. Psychologically survivors deal with a raft of issues that only other survivors can understand. Only through internet support groups have I found the solace and understanding of other survivors.      

What is one positive thing that has come out of your SCA/diagnosis? 
Living the life I never would have had including a first class, all expenses paid trip to the London Olympic Games.

What encouragement or advice would you give someone who has just survived a SCA or been diagnosed with your condition?  
To reach out to the support community for both SADS conditions and Brugada Syndrome as soon as possible, you are not alone. Study up on your condition and become your own advocate.

What does your day-to-day life look like?
I am happy to say pretty much normal. I have a few risk factors I have to stay aware of and I have an ICD and regular monitoring, but, I feel physically the same as I have been all my life.

What are your favorite hobbies and activities?    
Cruising in our Z28 Camaro with the top down and spending a few days away, boating and fishing, in our cabin cruiser, both with company of my lovely wife Sharon.

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Name: Heather Whitehurst
Age: 36
When was your SCA? September 26, 2015
Which SADS condition do you have? LQTS
How are you treated? Beta blocker, ICD, paced to not go below 60bpm to help prevent arrhythmia as lower heart rates are a known trigger for me, avoiding meds on the CredibleMeds list unless benefit outweighs risk

Can you tell us about your Sudden Cardiac Arrest (SCA)?
I had just woken up from a late day nap as I wasn’t feeling good and was making a cup of coffee before I did my night-time routine with my kids (who were 6 & 8 at the time). As my coffee was brewing, I was trying to read a text on my phone and couldn’t focus my eyes to read it and for a brief moment, I felt short of breath and severely dizzy. That’s the last thing I remember.
Luckily, my kids heard me collapse because when I collapsed, I kicked the pots and pans cabinet which made lots of noise and my head slammed against a kitchen table chair.
When I didn’t respond to my kids asking from their beds if I was ok, they got out of bed to check on me. When they couldn’t wake me up and saw that my lips were blue, they ran outside to get my husband/their father who was sitting on the front porch.
My husband immediately started CPR as he was dialing 911. There’s a fire station less than a mile from our house and they got to my house within minutes so I was only down for about 5 minutes. Once at the hospital, I had 2 more SCAs.  

Did you have any warning signs of having a SADS condition before your SCA? 
Yes, I did. I had over a dozen episodes of suddenly passing out, none of which was during activity. I sought out care for all but 2 of them, at the ER.
I had ECGs each time in which I was told that my heart was “perfect” even though a prolonged QT was noted and several times it was recommended I be evaluated for Long QT Syndrome (LQTS). 
I was never told about it and the ER doctors noted in my record that my QTc wasn’t “long enough to be a concern”. Instead I was misdiagnosed with vasovagal faint, anxiety and/or stress.
The 2 episodes of passing out that I didn’t seek care for occurred a couple of weeks before my SCA and occurred back-to-back. I passed out, came to and immediately passed out again with coming to feeling like my body was vibrating (suspected seizure). I didn’t seek care because every time that I sought care previously, it was shrugged off as nothing to be concerned about. 

What has been the biggest challenge you’ve faced as a SCA survivor and/or living with your diagnosis? 
Medical professionals not understanding LQTS and/or not taking it seriously and also being chastised for being an informed/educated patient. 
Being a SCA survivor, I’ve struggled with memory issues caused by anoxic brain injury and learning to accept the new “me”. One thing that has made being a SCA survivor even more frustrating, is the total lack of after-care unless I demanded it and the lack of research about SCA survivors/survival. 

What is one positive thing that has come out of your SCA/diagnosis? 
Meeting some pretty awesome people thru social media support groups and recently at the SADS Conference in Atlanta. 

What encouragement or advice would you give someone who has just survived a SCA or been diagnosed with your condition? 
Educate yourself about your condition!! Ask plenty of questions!! Find support!! Patients CAN live a “normal” life with LQTS. It’s definitely a scary condition but diagnosis and proper treatment prevents the worst from occurring and allows that “normal” life to be lived!!

What does your day-to-day life look like?
Like it did prior to my diagnosis except I pay a lot more attention to the “little things” and I forget where I had put my coffee more, LOL. 

What are your favorite hobbies and activities? 
Hanging out with my family and friends. Supporting others. Watching my kids grow. Collecting dolphin figurines. Starting projects that I somehow never finish!

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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.

Natalie Moye and her family.

She was 26, and she had just given birth to her first child, Elliot, 8 weeks earlier. She wanted to lose the baby weight, so she decided to join a weight loss and healthy lifestyle program. Before she could begin, she needed to get some routine blood work and an EKG.

But after the doctor reviewed her EKG, he looked concerned. He asked Natalie if she had ever had an EKG before. As far as she could remember, she had never needed one. She had always been healthy—she even played sports back in high school.

The doctor told Natalie something was abnormal: Her QT interval was prolonged. The doctor said it could be the result of some medicine Natalie was taking, but just to be safe, he made an appointment for her to see a cardiologist the following week.

Seeking Answers

The news at the cardiologist’s office was no better—Natalie’s QT interval was even longer. The cardiologist said Natalie could have Long QT Syndrome. Natalie had never heard of it, and she had no idea what it meant.

The cardiologist asked if she had ever fainted suddenly. She never had.

Then, he asked whether anyone in the family had died suddenly, and seemingly without explanation.

The answer was yes. When Natalie was 2 years old, her 23-year-old aunt died unexpectedly. The aunt had been on a ketogenic diet, and her potassium levels bottomed out. Ultimately, that was the believed cause of death.

When Natalie told the story, the cardiologist grew more concerned—and he was even more convinced she had Long QT Syndrome. From the look on his face, Natalie could tell this was serious.

“He scared me at that first appointment,” she said. Afraid and overwhelmed, she started sobbing. On top of caring for a newborn and managing postpartum emotions, now she was dealing with a potential life-changing diagnosis that could be connected to the death of her aunt.

The cardiologist said Natalie needed genetic testing, and she left with a prescription for a beta blocker. She was so distraught, she couldn’t drive home.

She wanted to get a second opinion. Her mom worked for a different cardiologist, and Natalie got an appointment with him the next day.

Sure enough, her QT interval was still long—530, to be exact. The doctor wanted more information. Right then and there, he did an EKG on Natalie’s mom. Her QT interval was also long.

“We were just all kind of blown away,” Natalie said.

She also learned she would need to get her baby boy tested. The weeks of waiting for his test results gave her a lot of anxiety—so much that she and her husband debated whether to have more children.

Finally, little Elliot’s results came back. He had Long QT Syndrome, too.

“I just had this feeling, ‘We’re all about to die,’” Natalie said.

But at the same time, she was thankful to know about the condition. If it hadn’t been for that first doctor who paid close attention to her EKG, they might never have been diagnosed. Natalie wrote him a letter, thanking him for potentially saving a life.

Natalie shared the diagnosis with her family members so they could be informed, too. Some chose to get tested, while others did not.

Living with LQTS

As she grappled with her new diagnosis, Natalie looked for support. She found it through Facebook groups: Long QT Syndrome Support and Learning Community and Living with an ICD.

It helped Natalie to hear from others who have Long QT Syndrome—and who were raising young kids with it.

“They had already been through the trenches,” she said.

The week of Elliot’s third birthday, Natalie went through a trench of her own. Elliot had a stomach bug and couldn’t keep anything down, so he ended up in the ICU. For a few seconds, the monitor showed he had a short run of torsade de pointes—a type of arrhythmia. The medical team rushed to his side. It was so brief, he didn’t faint. Thankfully, that’s the only scare they’ve had.

Now, Elliot is 4 years old, and he takes a beta blocker twice a day. Natalie sends an AED to school with him because “his heart is special like Mommy’s.” But that’s the extent of his knowledge for now, and Natalie wants him to live a full, normal life. He plays soccer, and he loves playing trains and riding his bike. 

Natalie and her husband also have another child now—a 1-year-old girl named Camille. They had her tested as soon as she was born, and she doesn’t have Long QT Syndrome.

Not a day goes by that Natalie doesn’t think about Long QT Syndrome. But now that she’s done some research on the condition, she feels less anxious and more confident.

Getting the Right Treatment

She is also confident in her treatment. Shortly after her diagnosis, her cardiologist told her she needed an ICD. Just as before, Natalie wanted a second opinion. She got the same answer: She needed an ICD.

But getting an ICD was a big decision, and she wanted to feel completely comfortable. So her family traveled from their home in Alabama to the Mayo Clinic in Minnesota. There, Natalie saw Dr. Michael Ackerman, a leading expert on Long QT Syndrome.

During the visit, they determined that getting an ICD would indeed be the best treatment for Natalie’s situation. That gave Natalie the certainty she needed to move forward. Her ICD is in a unique spot—it’s in her abdomen, with epicardial leads. This placement made the most sense for her. Even though she still ended up with an ICD, she’s glad she didn’t just go with the first doctor’s recommendation.

Through her experiences, Natalie has learned the importance of advocating for her health, and she encourages others to do the same. Even if later doctors only confirm what the first one said, those extra opinions provide peace of mind—and that peace makes a big difference.

If you would like to share your story with SADS Channel, contact us at SADSblog@sads.org!   

Unfortunately, most attempts to place research calls in online support groups are clueless and clumsy. For instance, posting calls directly for research participation without asking the administrator(s) first is not welcome in many groups.

I delete respective posts in my community.

If you are a researcher and you consider to use the resources of online patient communities for your study, this is how you will succeed most likely:

1. Contact the admin(s) and ask for permission to post your promotion in the group
2. Describe your project precisely and include eligibility in your message to the admin(s) and in the post
3. Point out that you are working for a respectable university/institution/organization
4. Offer to share your findings and recommendations with the admin(s) or the group later on

Note from SADS Channel administrators:  The SADS Foundation supports research by serving as the critical link between patients, healthcare providers, and researchers.   Read about our role in research and our research policy here.
If you are a leader of an online community that serves the SADS population and we can be of assistance, don’t hesitate to contact us.   

The trolls used the night from August 28th to August 29th 2014 well. When I – the founder and administrator of the Living with an ICD Facebook Support Group- was sleeping peacefully, one of the troublemakers wrote a short post about Implantable cardioverter-defibrillators (ICD) going off during sex and “spoiling the mood”. Two others spammed the thread with useless and raunchy comments over a period of six hours.

In the morning, I noticed the sex post with its 600+ comments, a record by far until then. It was suspicious to say the least.

The thread on and itself did not violate my group’s guidelines. I allow debate and controversy related to ICD experiences, because my closed support group on Facebook should not be a comfort zone. But when I cross-checked the comments, I realised the trolls had achieved their goal. The other members of the group had fed them big time.

I did not blame the members. They tried to re-establish a civilised discussion. Rather, I was annoyed at myself because I did not inform the community on how to deal with trolls. It took me about three hours to clean the post from the nasty comments and to identify the perpetrators. I banned them from the group. I thought I had solved the problem. I was wrong.

The trolls from that evening joined forces and founded their own support group with a similar theme.  I was told it was very similar to my group except for the spin to humor and entertainment.  They even used a copy/paste version of my group rules.

All of a sudden, I was losing members while the new group was growing rapidly. It was put to me that they were trying to steal and attract new members from my group “behind my back”. I thought it was bad style and impertinent considering the efforts to grow my group’s reach. I was upset and uncertain. But I drew a few lessons from this unpleasant episode:

1) Do not get irritated by short term developments. If the focus and strategy of a support group are right, they will withstand turbulences.

2) Intervene early if you see a post running amok. Do not hesitate to kick trolls and troublemakers from the group quickly. I certainly was too lenient in the beginning.

3) State your “house rules” clearly and enforce them.

4) Enlighten the community on how to deal with antisocial behaviour in your group. Tell them not to “feed the trolls” and to report.

5) Provide the community with valuable and useful content, for instance with articles, polls and videos.

Since then, I did not encounter another disruptive incident in my group any more. On the contrary: It is growing rapidly and is the biggest ICD community on Facebook with 4600+ members. Moderating the group in the morning on the way to my workplace has become a daily ritual. It is like talking to an extended family.