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 | Jan 13, 2020 | Advocacy, Awareness, ICD, Long QT Syndrome, SADS Spotlight, Support Groups
Name: Jaclyn Kernion Age: 38Which SADS condition do you have? LQTS1How are you treated? Treated with beta blockers from age 14 and AICD implant at age 24 (on my 4th device currently) When were you diagnosed? I was CORRECTLY diagnosed after 9 yrs of fainting and...
by kymera_editor | Oct 17, 2019 | Awareness, Conference, CPR, ICD, Long QT Syndrome, Online Patient Communities, SADS Spotlight, Sudden Cardiac Arrest, Support Groups
Name: Heather Whitehurst Age: 36When was your SCA? September 26, 2015 Which SADS condition do you have? LQTS How are you treated? Beta blocker, ICD, paced to not go below 60bpm to help prevent arrhythmia as lower heart rates are a known trigger for me, avoiding meds...
by kymera_editor | Oct 16, 2019 | Awareness, CPR, ICD, LCSD, Parenting, SADS Spotlight, Sudden Cardiac Arrest, Support Groups
Name: Lila Wolfram Age: 4When was your SCA? October 2015 (8 months old)Which SADS condition do you have? Idiopathic Ventricular TachycardiaHow are you treated? Lila has a Medtronic Evera ICD. She had a left side sympathetic denervation (LCSD) performed at 10 months...
by kymera_editor | Apr 23, 2019 | AEDs, Long QT Syndrome, Sports/Exercise, Support Groups
If you can’t fly. Run.If you can’t run. Walk. If you can’t walk. Crawl.But by all means keep moving. ~Martin Luther King Jr. Nothing about a new diagnosis is easy. There are so many questions, so many fears, so many life changes that happen. When our...
by kymera_editor | Sep 17, 2018 | Brugada Syndrome, ICD, Long QT Syndrome, Support Groups
Bridget McGaughey, 37, has Long QT Syndrome and Brugada Syndrome. She was diagnosed in 2012 at age 32. Her treatment is an ICD. How/when were you diagnosed? I was diagnosed after a syncope episode in 2012. I did a face plant (ouch) in a parking garage after walking...
