by Annie Hill | Jul 5, 2019 | AEDs, ICD, Long QT Syndrome, SADS Spotlight, Timothy Syndrome
Name: Aurora Age: 2Which SADS condition do you have? Timothy SyndromeWhen were you diagnosed? 10 months for LQTS & 1 year for Timothy Syndrome How are you treated? Beta blocker (propranolol), ICD (implanted February 19, 2019) How/when were you diagnosed?...
by CJ Heil | Jul 1, 2019 | Camp, Long QT Syndrome, SADS Spotlight, Sports/Exercise
Name: CJ HeilAge: 20Which SADS condition do you have? Long QT SyndromeWhen were you diagnosed? Oct. 2010How are you treated? Beta Blocker (Nadolol) What has been the biggest challenge you’ve faced in living with your diagnosis? Knowing that even though it’s not...
by Kristyn Navarro | Jun 28, 2019 | ICD, Long QT Syndrome, SADS Spotlight, Sudden Cardiac Arrest
Name: Brody NavarroAge: 8Which SADS condition do you have? Long QT Syndrome (calm 1 gene) When were you diagnosed? May 11, 2016 age 5 How are you treated? ICD and a beta blocker (propranolol) How/when were you diagnosed?Brody was swimming in our...
by Theresa Reinel | Jun 20, 2019 | CPVT, ICD, SADS Spotlight, Sudden Cardiac Arrest
Name: Joseph “Joey” ReinelAge: 4 Which SADS condition do you have? CPVTWhen were you diagnosed? Age 3 – after surviving a SCAHow are you treated? Medicine – beta blocker (propranolol) and anti-arrhythmia (amiodarone) and an ICD implanted Aug 2018How/when...
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 Michelle Berg | Apr 3, 2019 | Long QT Syndrome, SADS Spotlight
Name: Jaren BergAge: 10Which SADS condition do you have? LQTS Type 1 When were you diagnosed? November 2017 at age 9 How are you treated? Nadolol 40mg, Left Cardiac Sympathetic Denervation, ICD How/when were you diagnosed?We went to Mayo in November 2017 for a second...
