Stories: Living & Thriving with SADS

I am not sure of a date that Long QT was found in my family, I do know that my uncle (my mother’s brother) and a distant cousin passed from having undetected Long QT. Please let me note that I am not sure what type or types are in my family as of right now! My Grandma (my moms mom) and I both have none active LQTS and are currently not taking any medications for it. My Mother has an active case of LQTS and is currently on medication for it due to having problems. So I guess that is where my you... see more

August 10th, 1995, was one of the worst days of my life. I had slept over a friend’s house the night before and rode my bike back home the next morning to get ready for volleyball practice. As I peddled into the driveway, my neighbors were waiting for me telling me that my brother had passed out after waking up for band practice, and that the ambulance had taken him to the hospital. A few minutes or even hours later, my other neighbor pulled in their driveway with my parents. I will never forg... see more

Let me start this by telling you a little bit about Jo. Jo has been a very sport-affiliated child. He has played baseball since the age of 5, softball since the age of 7, and Pee Wee football since the age of 9. He is very athletic. He has played in USSSA World Tournaments and ASA World Tournaments all over the world and holds many first place honors. He got to Jr. High and decided to play football. I was all for it. ... see more

It was late on a Sunday evening when everything Jackie Nichols had worked for, everything he'd put his energy and imagination into creating, fell horribly into perspective. His life's biggest achievement, a $12.5 million performing arts center on the corner of Cooper and Union, was nearly ready for its public debut. Playhouse on the Square's alumni were flying in from across the country. The press was calling for interviews. The bills were already paid. And as if any man needed more reas... see more

Justin Matthew Paul was born August 9, 2011 and was diagnosed with LQTS2 about 8 hours after birth. Justin lost his color in the nursery shortly after he was born and the nurse initially thought it was his blood sugar, but she listened to his heart and thought she heard a murmur. He didn’t have a murmur, but because she heard something they ordered an EKG and chest x-ray. The results just happened to land in the right hands at the children’s hospital and they immediately transported Justin to ... see more

My name is Justin Park, and I was diagnosed with Long QT Syndrome at 18 years old. Prior to the diagnosis, I was a very active athlete that participated in several sports in high school. With a focus on endurance sports, I had a strong competitive background in both swimming and running, focusing on breaststroke and the individual medley in the pool and posting a personal-best 4:14 mile while garnering All-State honors in Cross Country and Track & Field. However, my true passion was soccer, and ... see more

I will never forget the day my dear friend, Ann, called to tell me that her daughter Kaitlin had been diagnosed with LQTS. She had been hospitalized after fainting at a track meet and was diagnosed with the disorder. Ann tried to explain it to me—but I ended up spending a lot of time on the Internet reading about it in order to understand it more completely. When her other children were tested, it was discovered that her son Ryan also had LQTS. After crying with Ann and for her beautiful childre... see more

In today’s busy lives we have to be open to the unexpected and rise to the challenges that come our way. I can assure you that my overflowing calendar had no room for the news of being diagnosed with LQTS in June of 2000. As a mother of two teenager daughters, newly enrolled in an MBA program and an executive in a thriving manufacturing business, I was already scheduling back to back. From dawn to dusk I was on the go…. ... see more

I experienced Sudden Death 19 years ago and was in a coma for 3 days. After coming out of the coma i was implanted with an icd. ... see more

Making a difference that would affect many people is something I have thought would be exciting to do. I never dreamed I could make this happen as a 16 year old. It all started at my sophomore meeting when my high school counselor showed my mom and me a history of all my grades. It not only had the grades that would show on my report card, but also the grades I had received on semester finals. Everything appeared to be normal, but then we noticed something strange. I had gotten a "D" on my sem... see more

My story is like everyone else’s; worked hard, paid the bills, raised the kids and living life with your normal life worries. In 1995, when my mother was diagnosed with Long QT Syndrome, which is hereditary, how was I to know MY life was would change with her diagnosis. So at the Dr’s request, my three sisters, my brother and I went and had EKG’s done. WE WERE ALL OK! NO Long QT for us! And so we thought! Long QT syndrome (LQTS) is a disorder of the heart's electrical activity. It may ca... see more

On 1/25/2012 my wife collapsed mid conversation in the car with no breathing and no pulse. I stopped the car and pulled her out onto the street to begin CPR. I know I started CPR within two or three minutes max. A bystander called 911. ... see more