by kymera_editor | Oct 21, 2019 | Brugada Syndrome, CPR, ICD, Online Patient Communities, SADS Spotlight, Sudden Cardiac Arrest
Name: Dave Whelan Age: 57 When was your SCA? Feb 10, 2012Which SADS condition do you have? Brugada Syndrome How are you treated? ICD and regular cardiology follow up Can you tell us about your SCA? My SCA occurred while working on a remote mine site in the...
by kymera_editor | Oct 17, 2019 | Awareness, Conference, CPR, ICD, Long QT Syndrome, Online Patient Communities, SADS Spotlight, Sudden Cardiac Arrest, Support Groups
Name: Heather Whitehurst Age: 36When was your SCA? September 26, 2015 Which SADS condition do you have? LQTS How are you treated? Beta blocker, ICD, paced to not go below 60bpm to help prevent arrhythmia as lower heart rates are a known trigger for me, avoiding meds...
by kymera_editor | 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 kymera_editor | Jan 13, 2018 | ICD, Long QT Syndrome, Online Patient Communities, Parenting
For Natalie Moye, what started as a basic wellness check led to a life-changing diagnosis. She was 26, and she had just given birth to her first child, Elliot, 8 weeks earlier. She wanted to lose the baby weight, so she decided to join a weight loss and healthy...
by kymera_editor | Dec 20, 2017 | ICD, Online Patient Communities, Research
As a fast growing online patient support community with 5700+ members, my Facebook group “Living with an ICD” is attracting the attention of researchers. More and more, they discover the potential of social media to reach patients for medical studies. Unfortunately,...
by kymera_editor | Aug 26, 2017 | ICD, Online Patient Communities, Support Groups
The trolls used the night from August 28th to August 29th 2014 well. When I – the founder and administrator of the Living with an ICD Facebook Support Group- was sleeping peacefully, one of the troublemakers wrote a short post about Implantable...
