by Carla Oxtoby | Nov 19, 2020 | Awareness, Connecting with others, ICD, Long QT Syndrome, Parenting
I was diagnosed with Long QT syndrome in July 2001, I was 23 years old. I decided to share my story in hopes that it may help someone in the future diagnosed with this same condition. When I was first diagnosed there was a girl my age that was also a...
by Jessica Robinson | Jul 17, 2020 | Advocacy, Connecting with others, Long QT Syndrome, SADS Spotlight, Sports/Exercise
My name is Jessica, I am 22 years old and I have LQTS. Throughout my childhood and adolescence, I was involved in many activities, including cheerleading, softball, and my high school’s marching band. While these activities were fun, they caused me to suffer from...
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...
