by Alan London | Jan 11, 2022 | Fundraising, Grief and Loss, Long QT Syndrome, SADS Spotlight
In 1997, my wife and I had three kids. Our son Michael, who was eleven, had fainted twice. The first time, it was explained away by the E.R. and his pediatrician as a vasovagal episode from unusual activities. The second time, he got an EKG and was examined by a...
by Kathi Blum | Jan 4, 2022 | Fundraising, Grief and Loss, Long QT Syndrome, SADS Spotlight
In 1999, we got a phone call on a Friday from our son who lived on a college campus where his sister also went to school. We were on vacation. He said that his sister had passed away – he wanted to tell us before the police called us. Nobody knew why she had passed...
by April McCloud | Dec 14, 2021 | Awareness, ICD, Long QT Syndrome, SADS Spotlight
Can you tell me a little bit about your SADS journey? I was diagnosed with Long QT when I was eight years old, and was able to get genetic testing as an adult to identify that I have multiple LQTS Type 2 mutations. As a child in the ‘90s, the doctors knew very little...
by Michaela Hetzler | Jun 9, 2021 | Awareness, ICD, Long QT Syndrome, SADS Spotlight, Sports/Exercise
At the age of 15 years old, I was a three season athlete in high school: soccer, basketball, and track and field. They were a huge part of how I defined myself – I loved sports. I was in a track and field hurdle event, got dizzy at the finish line, and almost passed...
by Cynthia | Feb 25, 2021 | Awareness, Connecting with others, Long QT Syndrome, SADS Spotlight
Name: Cynthia Age: 58 years old Which SADS condition do you have? Type 1 LQT When were you diagnosed? Since 2008, over 10 years How are you treated? Toprol How/ when were you diagnosed? My diagnosis began through a routine primary care visit that discovered it through...
by Amy | Feb 5, 2021 | Awareness, Connecting with others, Long QT Syndrome, SADS Spotlight
When something unusual came up on Amy’s ECG in 2019, she was anxious about what could be wrong. She was having panic attacks and feeling very low, and “not knowing what was wrong made [it] worse.” Amy waited 11 long months for her genetic test to come back, which...
