by Theresa Reinel | Jun 20, 2019 | CPVT, ICD, SADS Spotlight, Sudden Cardiac Arrest
Name: Joseph “Joey” ReinelAge: 4 Which SADS condition do you have? CPVTWhen were you diagnosed? Age 3 – after surviving a SCAHow are you treated? Medicine – beta blocker (propranolol) and anti-arrhythmia (amiodarone) and an ICD implanted Aug 2018How/when...
by Alison Hege | Mar 22, 2019 | CPVT, SADS Spotlight
Alison and her husband after competing in the 2018 USAT Duathlon National Championship! Name: Alison HegeAge: 30Which SADS condition do you have? CPVTWhen were you diagnosed? May 2016 How are you treated? 60mg Nadalol daily, Left cardiac sympathetic denervation...
by Chelsi Mathis | Mar 18, 2019 | CPVT, SADS Spotlight
Chevy with his sister Zoiey Name: Chevy Mathis Age: 10Which SADS condition do you have? CPVT When were you diagnosed? February 2017 after a cardiac arrest How are you treated?Nadolol 2x daily, Flecainide 3x daily, and his “Iron Man Arc Reactor” AKA- his ICD What...
by Kennedy Cooper | Jan 4, 2019 | Conference, CPVT, ICD, Sudden Cardiac Arrest
Read Kennedy’s previous post for the first installment of her story. January 23rd. Some recognize this date as the day Richard Nixon announced an accord to end the Vietnam War, or the day LeBron James became the 7th and youngest player to reach the 30,000 NBA point...
by Shawna Montoya | Dec 20, 2018 | Camp, Connecting with others, CPVT, ICD, Long QT Syndrome
Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California. You see, I was in the midst of trying to digest the fact that my daughter had this thing called Long QT Syndrome and CPVT (yep—both) and that she had...
by Rachelle | 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,...
