by Erinsads | Mar 1, 2021 | Blog
My daughter, Sophia, will be four in April. She was born in 2017. I really didn’t have any huge concerns going in. It was just very exciting. But of course, I wanted to be very careful and make sure that we were taking proper precautions as needed. And my OB-GYN...
by Erinsads | Jan 13, 2020 | Blog
Name: Jaclyn K. Age: 38 Which SADS condition do you have? LQTS1 How 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 multiple...
by Erinsads | Aug 19, 2019 | Blog
by Alexis H. Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor...
by Erinsads | Sep 1, 2018 | Long QT Syndrome
by Kellie Kotraba Moore On the way to high school graduation rehearsal, a classmate made an unusual confession. “I’ve never told you this,” he said. “But I’m really sorry about your heart.” Rather than feeling touched by his words, I felt a little insulted. As an...
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,...
