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 Leslie Needham | Apr 23, 2020 | Advocacy, CPVT, Parenting, Sudden Cardiac Arrest
Lily and her sister Charlotte My daughter has CPVT. My daughter, Lily, suffered sudden cardiac arrest while swimming in our pool on July 8, 2012. She went without oxygen for an estimated 11 minutes. Lily continues her recovery from the resulting anoxic brain...
by Heather Darling | Apr 20, 2020 | Genetic Testing, ICD, Long QT Syndrome, Parenting, SADS Spotlight
Heather and her son Carter Name: Heather Darling Age: 33 Which SADS condition do you have? Long QT Syndrome Type 2 When were you diagnosed? A little over 20 years ago How are you treated? Beta blockers and ICD How/when were you diagnosed? One morning in fifth grade my...
by Cicely Enriquez | Apr 20, 2020 | Awareness, Long QT Syndrome, Parenting, Sports/Exercise
Joey at golf camp through Children’s Heart Association in Cincinnati. When my son, Joey, was six years old, he was diagnosed with Long QT Syndrome Type 2. The day he was diagnosed was the hardest day of my life but I want to tell our story in the hopes that my...
by Danielle Wright | Apr 20, 2020 | CPVT, ICD, Parenting, SADS Spotlight, Sudden Cardiac Arrest
Name: Danielle Age: 38 Which SADS condition do you have? CPVT When were you diagnosed? Oct 2017, after 20 + yrs of misdiagnosis How are you treated? (Beta blocker, ICD, etc.) ICD placed in November 2017, nadolol and flecanide How/when were you diagnosed? I had a...
by Kristin Ristine | Apr 20, 2020 | Genetic Testing, Long QT Syndrome, Parenting, SADS Spotlight
Kristin’s daughter the day she wore her first holter monitor. Name: Kristin Ristine Age: 34 Which SADS condition do you have? Long QT Syndrome Type 1 How are you treated? On beta blockers How/when were you diagnosed? My mom was diagnosed while at the hospital...
