by kymera_editor | May 19, 2021 | Awareness, Fundraising, Long QT Syndrome
Can you tell me a little bit about your family’s SADS journey? Our son was seven years old when he cardiac arrested. We went to go wake him up for school and we found him dead in bed, and we did CPR. He was in a coma, and had hypothermia therapy, and then recovered....
by kymera_editor | Apr 12, 2021 | Advocacy, ICD, Long QT Syndrome, Sports/Exercise
Growing up I suffered from frequent fainting spells and would talk about my heart “feeling funny” while playing competitive sports. I was a happy and healthy kid who didn’t complain much, so my mom immediately took me to a cardiologist when I first mentioned this. A...
by kymera_editor | Mar 17, 2021 | Awareness, Connecting with others, ICD, Long QT Syndrome, Managing Multiple Diagnoses
This is a photo of my girls and I when I was asked to speak at a fundraiser for a gala. I spoke on some of my patient experience. The money raised went to help build a hybrid cath lab to perform lead extractions safely. What SADS condition do you have, and when...
by kymera_editor | Feb 25, 2021 | Awareness, Connecting with others, Long QT Syndrome, SADS Spotlight
Name: Cynthia Age: 58 years old Which SADS condition do you have? Type 1 LQT When were you diagnosed? Since 2008, over 10 years How are you treated? Toprol How/ when were you diagnosed? My diagnosis began through a routine primary care visit that discovered it through...
by kymera_editor | Feb 5, 2021 | Awareness, Connecting with others, Long QT Syndrome, SADS Spotlight
When something unusual came up on Amy’s ECG in 2019, she was anxious about what could be wrong. She was having panic attacks and feeling very low, and “not knowing what was wrong made [it] worse.” Amy waited 11 long months for her genetic test to come back, which...
by kymera_editor | 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...
