by Mona Allan | Aug 31, 2021 | Awareness, Long QT Syndrome, Managing Multiple Diagnoses
Mona as a firefighter/ paramedic in 1999Mona running the Phoenix Rock-N-Roll Marathon in 2005Mona post double mastectomy surgery In 2003 I was a very physically fit female Firefighter/Paramedic who was running full Marathons. I was 35 years old, a 14-year veteran of...
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 Holly Mulder | Nov 5, 2019 | CPVT, LCSD, Managing Multiple Diagnoses, Sports/Exercise
Hi! My name is Holly Mulder. I am 29 years old and I have CPVT. I live in Charlotte, NC with my husband and English Bulldog, Oliver. Oliver When I was 22, I started training for my first triathlon. A few years later, I had completed over 20 short...
by Alexis Holmgren | Jun 18, 2019 | Advocacy, ICD, LCSD, Long QT Syndrome, Managing Multiple Diagnoses, Online Patient Communities, SADS Spotlight
Name: Alexis Holmgren Age: 18 Which SADS condition do you have? Long QT Syndrome Type 5 When were you diagnosed? In 2013 at age 12 How are you treated? Beta blocker (Nadolol), Spironolactone, Left Cardiac Sympathetic Denervation (LCSD), and a dual chamber ICD with...
by Jillian Cheape | Apr 25, 2019 | ICD, Long QT Syndrome, Managing Multiple Diagnoses
Annie was born in May 2005 eight weeks early, and with kidney problems and unilateral talipes (club foot). Before her first birthday, Annie had two corrective surgeries and a successful reposition of her foot. This however, left her with leg length...
by Sheri | Mar 13, 2019 | Long QT Syndrome, Managing Multiple Diagnoses
We first contacted SADS when my middle child was 8 years old and had several “episodes” that looked like seizures. We had no idea what the problem was. His brain scans were good. His pediatrician told me “oh, all 8 year olds faint now and then”,...
