by Susan Cappello | Jul 6, 2021 | Connecting with others, Genetic Testing, Rare Disease, Research
The Cappello family Can you tell me a little bit about your family’s SADS journey? This all started in 1980, on the night of Easter Sunday. My family spent a full day with my oldest brother, and then he went to bed, and died suddenly in his sleep. The autopsy didn’t...
by Genevie Echols | 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 Kellie Moore | Mar 1, 2021 | Awareness, Connecting with others, Long QT Syndrome, Parenting
Name: Kellie Moore SADS Condition: LQTS Type 2 Tell me a little bit about your journey with pregnancy and SADS. 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...
by Cynthia | 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 Amy | 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 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...
