by kymera_editor | Jun 15, 2018 | Connecting with others, CPVT, HCM, ICD, Long QT Syndrome, Research, Sports/Exercise, Sudden Cardiac Arrest, Timothy Syndrome, Uncategorized
Seeing the doctor is always stressful. It’s even more so when you’re from out of state (like me) or even out of country. It can be very overwhelming. I admin a group and we get a lot of questions from people asking what it’s like, where to stay,...
by kymera_editor | Jun 13, 2018 | ICD, Long QT Syndrome
Kristie Lindblom, 38, has Long QT Syndrome Type 2. She was diagnosed in 1999 at 19 years old. Her treatment includes a beta blocker, spironolactone, and an ICD. How/when were you diagnosed? I was diagnosed during my freshman year of college. I had been passing out...
by kymera_editor | Jun 6, 2018 | Long QT Syndrome
Kellie Moore, 30, has Long QT Syndrome Type 2. She was diagnosed during childhood, and she is currently taking a beta blocker. What’s your diagnosis story? How did you find out you have this condition? We first found out about Long QT Syndrome because my grandma had a...
by kymera_editor | Apr 13, 2018 | Advocacy, Fundraising, Long QT Syndrome, Parenting, Timothy Syndrome
Fundraisers don’t have to be big or expensive to make a difference—they can be as simple as having people over for milk and cookies. That’s something Mary Ann Ciciarelli knows to be true. For the past seven years, her family has hosted a milk-and-cookies fundraiser in...
by kymera_editor | Apr 10, 2018 | CPVT, Sports/Exercise
Every 10 years the American College of Cardiology publishes a large document about athletic eligibility for people with heart issues. These guidelines are written at the Bethesda Conference. The last one was in 2015, and the one previous to that was in 2005. This...
