I was lucky – I was diagnosed at birth. The doctors knew something was off with my heart rhythm when I was in utero, but the technology back then wasn’t advanced enough to know more than that. I was in distress when I was born, and I was born with heart block along with my LQTS Type 2. I was really fortunate to have pediatric cardiologists on the other side of Ann Arbor who knew about LQTS. I was zipped across town a few hours after I was born, and given my first temporary pacemaker. A couple days later, I was given my permanent pacemaker and started on a beta blocker. I’ve had the same course of treatment my whole life, and had an ICD/Pacemaker implanted in my early 20’s.

Things have come full circle with my daughter, Gabby, who had a similar presentation when she was born – she had heart block, and her first device put in right when she was born. But we knew a lot more this time around.

When I was growing up, the SADS Foundation was the only resource out there for families with LQTS. In the 1980s and 1990s, there wasn’t an abundance of information about LQTS – I remember my mom telling me that when they started learning about it, after I was born, they asked the cardiologist for all the medical journal information they could find. And it was only a handful of articles – they were able to print out every single article that existed. The SADS Foundation was a good repository for them.

A few years after my husband Brad and I moved to Michigan, the SADS conference was in Ann Arbor. I went to the conference and got reconnected. I was starting to have questions about having a child, being pregnant with a SADS condition, and what it would look like for the baby if she had it. I got connected to Alice, and I was able to meet other people with my heart condition face-to-face, which was pretty special.

After the conference, I emailed Alice directly about pregnancy and SADS conditions; I was hoping I could talk to somebody who’d gone through the experience. She responded very quickly and immediately connected me to a couple individuals who were really generous and shared their stories with me. Their openness about their experiences allowed me to feel confident about my decisions.  They were so important to me during pregnancy, and I still consider them friends. 

I started volunteering to be part of the Community Engagement Committee when I went to the conference in Ann Arbor. I was talking with volunteer Jen White and Alice about a research proposal – I have a history in clinical research and grant work – and we worked together to put together that application. That was the gateway to other activities. I like being on the CEC committee, and giving a little slice of the knowledge that I have to the SADS Foundation.

I’m also a facilitator for the SADS Foundation’s ICD Support Group. It was an honor to be asked to lead the group – I was very flattered. Even though I’m a facilitator, I’m also very engaged in the conversation, and it’s been a very powerful experience for me. It’s become a sacred time each month that my husband and I work very hard to block off.

It’s hard to describe what the feeling is when you find someone who’s going through the same challenges that you are. It’s validating. We all have different backgrounds in the support group – we have different communities and families, but we have that one unifying thing. And for many of us, that was such a pivotal moment in our lives, when we learned we were going to be living with an ICD – or woke up with one in our chest. It’s pretty cool that SADS was able to bring this group of people together and provide a platform for these discussions.

One of the reasons that I am active with the SADS Foundation is that I was grateful for those who were open with me, and I hope that my own experiences can help someone else who may feel like they need it. If you’re interested in getting involved, the SADS Foundation is a small organization – even though it provides a lot of information and resources, it’s very personal and personalized. Reach out to any individual person you find on the website and they can find the right activity for you. It’s easier than you think to get involved!

Are you interested in becoming a volunteer at the SADS Foundation? Click here to get started.

Name: Jaclyn Kernion
Age: 38
Which SADS condition do you have? LQTS1
How are you treated? Treated with beta blockers from age 14 and AICD implant at age 24 (on my 4th device currently) 

When were you diagnosed?

I was CORRECTLY diagnosed after 9 yrs of fainting and multiple misdiagnosis at age 14. I had been dehydrated, too thin, middle child trying to get attention, having seizures,  anxiety attacks, etc. Meeting Dr. James Perry was probably the best thing that ever happened to me! It took 19 fainting episodes, one which required full CPR, to finally get the right diagnosis. I shudder to think that I might not have woken up from any one of those. I am lucky indeed! 

What has been the biggest challenge you’ve faced in living with your diagnosis?

The biggest issue I have had is learning to not let my anxiety get the best of me. I try to keep it in the back of my mind as a precaution but not let it run my life. This is still a daily struggle for me.  I also swore that since my genes mutated and this was not inherited that I would have it END with me! I was fortunate enough to not pass it on to my daughter. However, it was a very difficult decision to make to not have additional children and risk passing it on. It’s something that I still struggle with but understand was the right decision for me personally.

What is one positive thing that has come out of your diagnosis?

Having this has made me stronger than I thought I could be. For years I lived in constant fear that I would faint again at any moment since so many different things triggered it. I felt like I was a ticking time bomb and hesitated to enjoy life, waiting for something to happen. Now that I am controlled well on medications I’ve become much more in tune with my body and recognizing things that bother me vs. what I can handle. I do tend to err on the side of caution and not do things that could provoke me. Fainting is not fun and getting shocked is definitely not fun. I feel like I’ve gotten to the point where I I’m living my life the way I want to with no regrets but also doing it safely.

What encouragement or advice would you give someone who has just been diagnosed with your condition?

Being diagnosed may be hard to hear but it’s actually the start of the next step. LIVING with it once you know what you’re dealing with is so much easier. When I was diagnosed there was no Facebook and I was introduced to a few penpals that had very different stories than mine. They had the same condition but most were asymptomatic with little to no restrictions. Utilize the resources on the SADS website and reach out to others on social media platforms and groups! Feeling like you are not alone in this is priceless. Being able to compare stories and talk to people with it has been immeasurable for me and my experience with living with this. 

Side note, I am on my 4th device in 15 years. My leads have cracked several times and the actual device has migrated downwards in my chest resulting in them needing to be adjusted or replaced. I’m really looking forward to this current device lasting much longer!  Knowing that these can mean lifetime ‘maintenance’ but also be a blessing as a backup is tough but I know is the right thing for me. Even on medication my QT interval is generally in the mid-to-high 500 range. I was told once that the condition is very strong in me but that my heart is also very strong and fights back. I feel like I’ve been given now 20 chances and have woken up with each…but do not want to ever risk not having a backup. The devices have been a very emotional thing for me but definitely something I will continue with.

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!

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

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. 

If you can’t fly. Run.
If you can’t run. Walk.
If you can’t walk. Crawl.
But by all means keep moving.
~Martin Luther King Jr.

Nothing about a new diagnosis is easy. There are so many questions, so many fears, so many life changes that happen. When our family got the Long QT Syndrome diagnosis, I can’t even begin to explain all my emotions and that doesn’t even include what my 9 year old was feeling. A life- threatening diagnosis is scary!  Hearing the doctor say to get an AED for a safety device is scary. It takes time to process and come to terms with this new process so don’t let anyone push you or make you feel like you shouldn’t be scared. We may look normal, but we still have this rare disease.

We are a very active family. So what did this mean for us? At 38, I was in the best shape of my life. Physical activity is one of my biggest joys. Would I have to change who I am? When I first saw the EP, she stated that until I had all my testing done, I should limit my physical activity until they could give me more answers to ensure my safety.  On top of feeling scared, I was angry. My once 4:30 am alarm clock to get my workout in was put on pause. My workout doesn’t only make me feel good, it is my stress reliever. The next couple weeks were a blur, but one thing I know for sure is I must have been hard to live with. I was emotional, scared, starting to get depressed and just plain miserable.

I had all my testing done and the doctor cleared me to become active again. I just needed to take my beta blocker and keep my heart rate below a certain level. Yay! I should have been excited right? Well, I honestly let what the doctor said go in one ear and out the other due to my own fear. Did the doctor know what she was talking about? Was I really safe? What if I died just because I wanted to workout? Was I being selfish? So I put my life on hold! I stopped being active and stayed this miserable person that even I didn’t like. Don’t get me wrong, to the outside world I put a smile on to pretend I was ok. I’m not sure if they could see through me or not.  I went through our everyday activities and tried telling myself I was ok, that I could find the new me. But I didn’t even know who this scared person was anymore. I still had daily responsibilities and had to be a mother and wife.

On top of finding me again, I also had a 9 year old that was also just diagnosed with Long QT Syndrome. I had so many different fears when it came to thinking about her living with this new diagnosis and this made me even more terrified. Will she live a normal life? Will she become asymptomatic? How do I protect her?  She was also scared. I put on my big girl panties and acted tough for her, telling her it will be ok! Our medicine is keeping us safe. These were all the things I was having a hard time believing myself.  I tried many times to get a low impact workout in to see if I could start feeling like myself again. However, my beta blockers were having a major impact on my performance when exercising. I felt sluggish and nothing like myself whenever I tried.  As I continued, I started to feel sorry for myself I felt gross in my own skin. I didn’t even know how to snap out of this. I became even lazier not wanting to even try to be active. What do I do now?

Luckily, the weather started getting a little warmer and my husband could get me out of the house for a walk here and there. One Sunday, he even got me to bundle up and go for a short bike ride. For the first time in months, I felt like myself again. Even once we got home I felt good! I had ordered an AED and was waiting patiently for its arrival. In the meantime, I messaged a girlfriend that had always been my workout buddy- we would always help keep each other motivated. We hadn’t talked in a while, I was avoiding it and honestly feeling a little jealous that I couldn’t keep up anymore. We chatted I asked what program she was working on, just a few messages back and forth and I wanted to try again.

The AED arrived and something inside of me clicked. This isn’t me! I am NOT a quitter. Just because I may not be where I once was, or may need to scale it down to start, didn’t mean I should stop. So I picked myself up and started! That’s all I could do was start. I was still scared. I started slow. Walking more, yoga, weights. I’m not going to lie, it is hard. I know there are a lot of arguments about if beta blockers impact exercise performance and I am here to say that for me, YES they do! Maybe they don’t for everyone, but I know my body and how it performs; and my beta blocker definitely affected my workouts. I slowly added low impact cardio and will slowly keep adding more! As I continue, I will protect myself. I will keep my heart rate where my doctor suggested, I will stay hydrated, I will never workout alone, If I don’t feel right I will stop, I will always keep the AED in our home and have everyone CPR certified.

I found me again. I started by crawling, currently I am walking, but soon I will be running! One day I even hope to fly! No….let me change that, one day I WILL fly! What matters most is that I don’t ever stop moving!  I was terrified to say out loud that I was scared. That I was angry. That I didn’t know who I was anymore! I was even more scared to admit it to all of you! What would everyone think of me? Then I realized, I am who I am because I put one foot in front of the other and didn’t stop moving. If sharing my story can help one person do the same, then it is worth the risk.

So please DON’T STOP MOVING! Don’t give up on yourself! You may be scared! You may feel down! You may be tired! You may have more restrictions than me (please listen to any restrictions that your EP gives you)! Your beta blockers may make you sluggish and out of breath. But please don’t STOP! Don’t give up! If you can’t RUN, walk! If you can’t walk, do yoga! You can do this, I know you can! I’m here to build you up and motivate you to be you again! Let’s not let Long QT define who we are. Did it change me? YES! It made me realize just how strong I am!

If you need motivation to keep moving forward I’d love for you to join our Facebook Group   Just Keep Moving!
Or feel free to send me a message at LisaLu@thelulumom.com.  I’d love to chat!

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.  

Bridget McGaughey, 37, has Long QT Syndrome and Brugada Syndrome.
She was diagnosed in 2012 at age 32.  Her treatment is an ICD.

How/when were you diagnosed? 
I was diagnosed after a syncope episode in 2012. I did a face plant (ouch) in a parking garage after walking up a flight of stairs. I had a brief moment or shortness of breath and then I was out like a light. I luckily awoke from this syncope and was then diagnosed in the ER with prolonged QT. They also found Brugada on an older EKG from 6 months previous. That abnormal EKG was done after I visited an Urgent Care experiencing shortness of breath and light headedness. My diagnosis was missed then. I am forever grateful and blessed I had a syncope episode and not a SCA.

What has been the biggest challenge you’ve faced in living with your diagnosis?
My biggest challenge I have faced yet is dealing with my emotions! After diagnosis, you go through a wave of emotions like a rollercoaster. You question your mortality and life in general. Although this was and sometimes remains a struggle, it has given me the strength and passion to live each day fully!

What is one positive thing that has come out of your diagnosis?
The best thing has been community! The SADS community is awesome, both online and in person. Facebook pages, the SADS conferences, etc are a great way to connect and feel a part of a group that understands.

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. 

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.