by Tisha | Jan 30, 2020 | Advocacy, Brugada Syndrome, Connecting with others, Heart Hero, ICD, Parenting, Rare Disease, SADS Spotlight, Sports/Exercise
Name: Tisha M. Age: 36 y/o Which SADS condition do you have? Brugada Syndrome When were you diagnosed? 12/27/19 How are you treated? (Beta blocker, ICD, etc.) ICD How/when were you diagnosed? I went to Urgent Care on 12/27/19 with complaints...
by Kate Hollingsworth | Sep 4, 2019 | AEDs, Awareness, Connecting with others, Long QT Syndrome, SADS Spotlight, Sports/Exercise
Name: Olivia KenworthyAge: 12Which SADS condition do you have? Long QT Syndrome When were you diagnosed? 2 yrs oldHow are you treated? Beta Blocker How/when were you diagnosed?An aunt “passed out” at work doing jumping jacks. She...
by Alexis Holmgren | Aug 9, 2019 | Camp, Connecting with others, ICD, LCSD, Long QT Syndrome
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 about anything...
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,...
by Sara Meslow | Nov 13, 2017 | Camp, Connecting with others
Camp can be an exciting and formative time during kids’ summer vacations, however for many parents with children with a heart disease, it might not be considered an option. As the director of one of several camps aimed specifically at children with heart disease, I am...
