Can you tell me a little bit about your SADS journey?

I’m a junior in high school. I used to be figure skater until I was diagnosed with ARVC, and that’s how I found out that I had it – I was skating when I had some arrhythmias. After a long process of being diagnosed, and going through a couple of surgeries, they decided that ARVC was what I had. That happened about a year and a half ago.

What was your reaction to your diagnosis?

I had a lot of free time after the diagnosis – when I was a competitive figure skater, that took up most of my day. I’d go to school and then go to the ice rink, and that would be it. So I had a lot of time, and I couldn’t join sports. I wanted to help people with similar conditions to mine, whether it be a SADS condition or a heart condition – even something they might not know they had. That’s why I started my charity, Heartfelt Harmonies, so I could help others.

Heartfelt Harmonies donates AEDs to organizations and youth groups who need them but might not be able to purchase them, so these facilities can be protected from cardiac events. I try to donate to underprivileged areas because a lot of people there might have an undiagnosed condition, and so they’re more likely to suffer from a cardiac event.

We’re hosting a photography exhibition with photos from all around Ireland in December; my grandfather was a famous Irish photographer and when he passed away, he left all his photos on flash drives. We printed them out and we’re going to raise money to get more AEDs.

What advice would you give to someone who was newly diagnosed with a SADS condition?

While initially being scared to hear about my condition, I have found that talking to others with similar conditions who had been through similar events was really helpful. ARVC being a hidden condition makes it very hard to find support and people who are able to understand.

“As with many Sudden Cardiac Arrests, I didn’t have any symptoms – it happened out of nowhere.”

Elisheva’s Sudden Cardiac Arrest came without warning. She had been a runner for many years, and was in great shape – she’d just had a physical a few months before her SCA. She went to catch an early flight at an airport in Boston, and the last thing she remembers was an attendant scanning her ticket, and walking down the connector to the plane. She woke up in the hospital with a ventilator in her mouth.

After her SCA, Elisheva went through lots of testing – including genetic testing – and learned that she has several arrhythmias, which are unidentifiable. She had an ICD put in – which she says is a constant reminder of how her life has changed.

“Gratefulness and grief aren’t mutually exclusive,” she says, noting that while she is extremely grateful to have survived the SCA, it has led to ongoing health problems in her life. “I have a wonderful group of friends, who are an amazing support group. I don’t know what I’d do without them – they’ve saved my life.”

Elisheva’s mission is to educate those around her on what SCA is, including that SCA is different than a heart attack, and can affect anyone – like children and young, healthy adults. “I’m always trying to get people to understand what SCA is, and that it can affect everyone – even children,” she says. “Once you have an SCA, you hear stories of people suddenly dying, and you know what that moment is.”

Elisheva wants to see AEDs spread throughout local communities to help prevent deaths from SCA. The airport where she had her SCA had eleven AEDs, even though it was small – and had performed another SCA save with an AED just a month before Elisheva’s. She particularly wants to see sports teams carry travel AEDs.

     Today all the police in our area have AEDs on their vehicles.  I always encourage people to learn CPR, and with a grant I applied for and received,  we teach all students in our school district over various grades and years about Long QT, heart arrhythmias, and they all learn CPR.

My name is Sarah, I am 55 years old, living in Saskatchewan, Canada.

On December 28th, 2018, I was attending the memorial service for my mother-in-law along with my immediate and a few extended family members.

I had just finished my tribute and was giving closing remarks. I went back to sit down beside my family, and without warning, my heart stopped.

Because I have some history of fainting, my husband didn’t realize what was going on at first, but very quickly realized that this was different.

My family members started CPR almost immediately, and my son ran outside to a neighboring business to get an AED as there was none in the building.

The AED was next door, but the business was closed and he wasn’t able access it.

The first responders were there within approximately 10 minutes and thankfully brought an AED with them, which they then used and were able to get a pulse.

I was intubated and brought into the hospital, where they then kept me in an induced comma for 48 hours. 

I awoke without neurological damage, which was a miracle, but had no recollection of what had happened.

I was diagnosed with left bundle branch block and mild cardiomyopathy.

After genetic testing, they have found this to be a genetic issue. 

I now have had an AED and Pacemaker implanted.

It has been over a year now, and I am grateful for life, for second chances. Without the quick responses from my family and first responders, I wouldn’t be here to tell my story today.

This event was not only extremely traumatic for myself, but for family as well. It has impacted us in many ways and we are still healing and learning how to cope with what happened.

No longer do we ever walk into a business or public place without looking for or noticing an AED.

We have donated funds to install an AED in local businesses, and continue to raise awareness about the importance of CPR and having an AED available for anyone, anywhere, 24 hours a day. I would like to see AED’s in cities and towns just like a fire extinguisher, where you would always have access to it if needed.

 My hope and prayer through this is all is that no other family will ever have to go through something like this.

Aurora went into tachycardia in February 2019, shortly after turning 2. She has Long QT Syndrome and she had RSV and rhinovirus. It was 3AM and my husband and I used our AED and CPR to save her life before paramedics arrived. She is now 3. 

Name: Susana Rodríguez 

Age: 32

Which SADS condition do you have? Long QT Syndrome

How are you treated? Beta blockers + always carry my AED to training.

How were you diagnosed?

When I was 28 I started to have abnormal findings in my EKGs, like inverted and notched T waves. As I race at elite level sports in triathlons and athletics, I do heart control every year so when this started I was asked to do ECo image studies and an MRI. Finally in December 2019, in my last stress running test, very abnormal QT prolongation was detected during effort and 4 min recovery. I was diagnosed with Long QT Syndrome finally at the end of January. I feel lucky to know this because at least there is an option for prevention. I only had some tachycardia episodes without other symptoms.

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

The hardest part for me was to realize that as an athlete, what I love most could be a potential danger for me. Receiving this diagnosis as a para-triathlon world champion and on my final build up for Tokyo 2020 Paralympic games (I have a very severe visual impairment) was stressful. I also found it hard to start beta blocker treatment because although it is good for me, it has given me some side effects such as dizziness. The first days I carried my AED to training it was hard to add this gear to my equipment because as a doctor I really know what sudden cardiac arrest means.

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

I have improved a lot in choosing which my priorities are in life and I feel good that I know about the condition so that I can take care of my body. I now understand the need of resting and listening to my body as an athlete when I feel tired. Beta blockers have made me feel very low in training but with time they have made me have a stronger attitude towards effort. As a doctor now I realize more how important is giving clear information to patients so that we can help them in decision making. I feel pleased that my cardiologist Dr. Alvarez was as clear as possible and listening to her was very helpful.

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

I think the best advice to give to someone in a similar situation is think on a daily basis and don’t stress about the future. Do things you enjoy and don’t be ashamed of having this condition. We can live an almost normal life.

Age: 40

Which SADS condition do you have? ARVC

When were you diagnosed? 2012 at age 32.

How are you treated? (Beta blocker, ICD, etc.) ablation in 2014, sotalol and an ICD

How/when were you diagnosed?

I was 32 years old and about 6 weeks pregnant with my second child when I went into Sudden Cardiac arrest out of nowhere. I was shocked twice at the hospital after my heart rate reached 300 And I was in SVT.  They had no idea why it happened until I took a genetic test for ARVC. I then had an ICD implanted at 5 months pregnant.

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

 Not being able to work out, run, play soccer, chase my kids around.  And all the limitations ARVC causes. It’s an unbelievable disease that gets worse when you do anything high endurance. It’s really a crazy type heart disease. And mostly…that I passed both of my genes down to my son. That has been the hardest to accept. We keep him out of high endurance sports as well and to think that he will have to watch out for this the rest of his life or possibly develop it (50/50 chance)…it’s gut wrenching. 

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

The people I’ve met. The wonderful doctors at St Luke’s Hospital in Wisconsin…the phenomenal doctors at Johns Hopkins that we’re able to perform my tricky ablation…and the overall thankfulness of still being alive! And my baby surviving. Things could have turned out much different.

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

 Get in contact with Johns Hopkins immediately! Their ARVC research is amazing. And so are all of the doctors. They also encourage you to talk to other patients with ARVC which has helped a lot. And overall just be an advocate for yourself and ask a lot of questions! Knowledge really is power. Also know that you can live with this. As hard as it is some days…you can still live a very full life!

What does your day-to-day life look like? 

Lots of time with family, full-time job, vacations. But it’s also some days of feeling really tired or dizzy. Having arrhythmias and out of breath. But each day is different and I still do all that I can!

What are your favorite hobbies and activities? 

Reading, spending time with my husband and children, walking, baking. 

How has the SADS Foundation been helpful to you?

It has been helpful to read all of the stories I have looked through. To know the happy and the sad ones and to appreciate how precious life is! But to also advocate for AED’s and CPR. And To know that I’m not alone.

Name: Bella Alvarez
Age: 11
Which SADS condition do you have? CPVT
When were you diagnosed? December 2018
How are you treated? Beta Blocker (Metoprolol)

How/when were you diagnosed?

I was diagnosed through genetic testing after my Father was diagnosed with CPVT and I lost my Aunt and Uncle at 15 and 16 years of age due to the undiagnosed CPVT.

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

The biggest challenge was taking medication and getting used to my Mom never leaving a cheer practice.

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

I am able to share my experience with others and teach others about the benefits of learning CPR/AED

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

Don’t be scared, at first you will feel bad but then you will learn to be ok.

What does your day-to-day life look like?

I started middle school this year and go to cheer practice three times a week for three hours each day, take my heart medicine every night at 9

What are your favorite hobbies and activities?

I love to dance with my friends and I love to fly in cheer

How has the SADS Foundation been helpful to you?

SADS foundation made me feel better about being different and reminds me I am not alone there are others just like me!

I am 27 years old and currently living with a SADS condition (Long QT Syndrome). I am always happy to share my story as it sheds light to the importance and necessity of bystander CPR along with the use of an AED.  

In 2007 I was 16 years old, running the mile at school when I suddenly collapsed. I was found without a pulse and while the odds of me surviving then were minimal (survival rates for out of hospital SCA in 2013 were 3%), I was extremely lucky and had peers and teachers that took action.  My teacher performed CPR, another called 911, and a student ran to get the AED.  Before the paramedics arrived my teachers and peers had performed basic life support, including an AED to restore my heart beat.

I was fitted for a pacemaker/ICD shortly after and now live healthy with medication and regular cardiologist visits. I’m eternally grateful for the people who took action on December 7^th, 2007 and I live with the daily reminder of the importance of knowing how to save a life.

I currently work for the American Heart Association on the Community Impact team and I use any and every chance I get to have our volunteers learn basic life support. That’s my way of paying it forward, showing my gratitude for this life, and for the ones who saved me.

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: Richard Lamphier
Location: Atlanta, GA  
Occupation: Program Manager Project S.A.V.E of Children’s Healthcare of Atlanta, an affiliate of Project ADAM

Why were you drawn to nursing as a career? 
I had a good friend who passed away. While he was in the hospital, he had 2 male nurses who encouraged me to be a nurse in his honor.

How long have you’ve been in nursing?
35 years. I joined Project S.A.V.E 6 years ago. Before that I worked in hospital cardiac ICU and cath lab.

What first got you interested in cardiac issues and prevention of sudden cardiac death?   
I had a team mate in high school who had a SCA. My coach did CPR on him and I will never forget the desperate look in his face when he was doing CPR. I want to try to make sure no one else has to go through that feeling of helplessness.

What are some of your recent projects and accomplishments?   
We recently passed the Sudden Cardiac Arrest Prevention Act in Georgia – Jeremy Nelson and Nick Blakely Sudden Cardiac Arrest Prevention Act (SB 60).  I’m a member of the Georgia High School Association’s (GHSA) Sports Medicine Advisory Committee. GHSA mandated that all high school coaches in Georgia are required to have CPR/AED training at least every 2 years. We have between 15,000-18,000 coaches in Georgia. The law went into effect July 1, 2019. I’ve been busy training coaches.

Can you tell us about a time when you were personally involved in a life saved?
Outside a hospital- one time in 35 years. It occurred at a health & wellness expo where Project S.A.V.E. had a table. Someone came to table and said “We need your help!” There was a toddler with complex medical condition and had no pulse, and had stopped breathing. I started CPR, with another nurse for 1- 2 minutes (with what seemed like hours!) and then I felt the child’s heart beat return under my hands.

Is there anything you are looking forward to? 
I’m looking forward to helping host the 2019 International SADS Foundation Conference in Atlanta. I’m also looking forward to the impact mandating CPR/AED training for coaches will have.

Is there anything you would like to say to fellow nurses about attending the SADS Conference in Atlanta? 
Some of these conditions are so rare in our pediatric population that it’s a great opportunity to learn about them. It’s important to recognize a SADS condition. Also a great opportunity to interact with patients and families to better understand what can be done in your schools and community. In addition to the healthcare provider program, the Family Conference will have continuing education hours for nurses.

What activities do you enjoy in your free time? 
Atlanta has some great things to do. I’m kind of a foodie. Atlanta has some great restaurants. I enjoy going to local sporting events, Atlanta Botanical Garden , and exploring all of what Georgia has to offer. We have the North Georgia Mountains with over 1,000 mapped waterfalls and the beaches of Southeast Georgia.  

What advice would you give to someone who is interested in getting involved with cardiac advocacy efforts to make their community safer? 
I think the best way to start getting involved with cardiac advocacy is to demonstrate the behavior you want to see in others. My wife and I both have AEDs in our cars, we donate AEDs to the community we live in and teach a lot of CPR/AED. We have a son-Deacon, 6- who knows the basic CPR steps: to call 9-1-1 and get an AED.

From here, I would recommend connecting with likeminded people, who are interested in advancing the awareness of cardiac issues. You could join us at www.choa.org/projectsave  for more information.

I think another great place to connect with is your state nursing association. I am currently the President of the Georgia Nurses Association.  We are always looking for speakers and causes for our members to get behind. I have a goal that all 140,000 nurses in Georgia would teach 5-10 people CPR/AED every year. That would be another ½ to 1 million people ready to respond in a cardiac emergency.

Another suggestion is to get to know your local elected officials- Mayor, city council person, school board member, State Senator and State Representative. Meet with them; let them know you are the content expert when it comes to cardiac issues, including awareness and preparedness.