by kymera_editor | Apr 21, 2022 | Long QT Syndrome, Parenting, SADS Spotlight
Stephanie and one of her daughters (who also has LQTS) Back in 1992, I was diagnosed with a condition called Long QT Heart Syndrome. Doctors discovered it through medication interactions, which caused a cardiac arrest. Doctors didn’t know as much about the condition...
by kymera_editor | Apr 19, 2022 | ARVC, Awareness, Heart Failure, Heart Transplant, Sports/Exercise
When Joelle was 12, she passed out in church – and testing revealed that the culprit was ARVC. And it progressed quickly – a year after diagnosis, at 13, Joelle got an ICD to help regulate the “electrical chaos” in her heart. Joelle had been a competitive figure...
by kymera_editor | Apr 15, 2022 | Long QT Syndrome, Raising Awareness, Support Groups
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...
by kymera_editor | Apr 14, 2022 | Advocacy, ARVC, Rare Disease, Research
How did you get involved with the SADS Foundation? I was at the University of Colorado in late 1999, finishing my residency in internal medicine. In my third year, I was a genetics and cell biology major. I designed a rotation where I could go out to genetic clinics –...
by kymera_editor | Apr 4, 2022 | Awareness, Long QT Syndrome, Parenting
When I was 14, I starting blacking out and have seizure-like activity, and we saw different specialists, but they couldn’t figure out what was causing the seizures. They did a bunch of different tests – MRIs and CAT scans – which all came back normal. Because of my...
