by Alexis Holmgren | Aug 9, 2019 | Camp, Connecting with others, ICD, LCSD, Long QT Syndrome
Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor about anything...
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 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 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...
