by kymera_editor | Jun 29, 2018 | Long QT Syndrome
Shannon Cron, 38, has Long QT Syndrome Type 2. She was diagnosed in 2017. She is treated with a beta blocker. How/when were you diagnosed? I was diagnosed after the death of my 14 year old daughter in August 2016 who was the first in the family to be...
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 | Feb 14, 2018 | Advocacy, HCM, Long QT Syndrome, Parenting, Sudden Cardiac Arrest
My heart breaks every time that I hear of a child dying suddenly from an undetected heart condition. How does one recover from knowing that if a diagnosis was made, their child may be with them today? I don’t have that answer, but unbelievably found myself...
