Stories: Living & Thriving with SADS

First I would like to take the time to say thank you to Kaiser Permanente, my cardiologist Dr. Schnitzer and Corinne Zemliak for putting together this ICD support group here in Woodland Hills. Community and the chance to fellowship with other ICD patients is a great opportunity to connect, and for that I thank you. My story with my ICD started on October 4th, 2012. I woke up on a lovely early Fall day, expecting it to be a typical day like the rest. The leaves in Southern California were t... see more

I am writing this story on behalf of my 24 year old daughter Brittany Williams. On 12/4/14 my husband, Brittany and I traveled from Tallahassee, FL to NYC for a four day vacation. On 12/6/14 Brittany went into cardiac arrest while at a restaurant. Two doctors came to her rescue. After finding no pulse, they began performing CPR which saved her life. I found out later on that both men were eye doctors and didn't know each other, they just happened to be in the restaurant at the same time. I ... see more

I'm currently 24 years old, and I got diagnosed with LQTS when I was 14 years old. I was on the way to basketball practice and my parents decided to stop and get something to eat beforehand. We all were walking in and I never made it. This is what my parents told me. I don't remember anything that happened. I passed out and had a seizure. I woke up and freaked out and got up telling my parents I was fine and let's go. I ended up passing out again and had another seizure and quit breathing. I was... see more

Not more than three weeks ago I was in the hospital delivering my second child. I was so excited for her to be here and to go home with her. She was born on Nov 25. We came home that Friday. The following monday I went into a seizure like episode and my heart stopped. Luckily my husband was home and did everything by the book. He called 911 and because of this I am able to be here to share my story and let people know about Long QT Syndrome. ... see more

Around 7 a.m. on March 26, Mark Knowles came home from an overnight shift at his part-time emergency medical technician job with the North Greece Fire Department. Coming in the door, he inadvertently set off the burglar alarm. He stopped at the bathroom to chat with his wife as she dressed for her job as a medical assistant at a Brighton cardiology office. They both wondered why Cameron, a first-grader at Greece's Holmes Road Elementary School, hadn't bounded out of his room when the alarm... see more

On the 29th of June 2011, I suddenly became aware that my heart wasn’t beating. Then I woke up. My first thought was “S--t, I’ve had a stroke,” and I went and looked in the mirror to see if my face had dropped. It hadn’t, so I was totally relieved that I hadn’t had a stroke. I then thought that maybe I should just check that I was OK, and rang my after-hours doctor. They sent an ambulance, which came quickly. ... see more

My name is Cheyenne, I'm 14 years old, and I was a competitive swimmer when the episodes had gotten very severe and repetitive. I have fainting spells, dizziness, and I have severe chest pain. My first doctor said it was simply just common fainting (vasal vagal syncope) and that simply taking some vitamins would make the episodes stop.... well they didn’t so we finally went for my second opinion. I had a stress test done and I completely passed out. All they had to say was "oh you were telling t... see more

Just weeks before her 5th birthday my otherwise healthy daughter collapsed in our living room she was experiencing her first seizure, while I phoned 911 she then went into cardiac arrest. Luckily she came back to us and so our journey began. She went through extensive tests on her brain the specialists were unable to find any reasons for the episode. Fast forward 7 months later, things were getting back to normal, we had just moved to a new province and my parents were up for a visit. My mom ... see more

Halloween 2011 is a day I will never forget. Go back to 12/2010 when my niece had been diagnosed with LQTS -1. Six months later my nephew. I remember thinking just how lucky we were as a family to have found out about this. But yet scared at the same time. In the middle of all of this I can’t stop thinking of my own two girls. Knowing that this is genetic my next step was to get them tested. ... see more

To understand why we chose ICD placement I have to take you back several years to the very beginning of ChloeJace's story. I must let you know that there may be some parts of the story that you may not like, however it is her story. Back in 2003 ChloeJace go sick, we could not figure out what was going on with. At age 3 she had already ben diagnosed with asthma, allergies, reflux, had tubes put in her ears, and had RSV. ChloeJace's would wake up in the mornings throwing up, afterward she woul... see more

Chris was born on August 1, 1987. He was born exactly on his due date and was perfectly healthy. He continued to enjoy good health until September 6, 2008. Up until that day, the only complications he suffered were occasional asthma attacks triggered by upper respiratory infections – which he outgrew by the age of 7. He excelled in school, sports, and enjoyed a Southern California life, having fun with his many friends and family.... see more

If you look at a list of things NOT to do if you have LQTS, I have probably done every one of them.... see more