by kymera_editor | 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 kymera_editor | Jun 21, 2019 | Long QT Syndrome, Research, Sports/Exercise
Calling LIVE-LQTS Research Study Participants! If you are enrolled in the LIVE-LQTS study, we would love to hear from you and thank you for participating. SADS Foundation is creating a web page to recognize members involved in this three-year study. We...
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 | May 23, 2019 | AEDs, Long QT Syndrome, Schools
As a LQT patient-parent as well as an educator-advocate of students facing chronic medical conditions in a large school district, I have learned that “peace of mind” can go a long way in learning to thrive despite medical challenges. We often feel sidelined by...
by kymera_editor | 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 kymera_editor | Apr 23, 2019 | AEDs, Long QT Syndrome, Sports/Exercise, Support Groups
If you can’t fly. Run.If you can’t run. Walk. If you can’t walk. Crawl.But by all means keep moving. ~Martin Luther King Jr. Nothing about a new diagnosis is easy. There are so many questions, so many fears, so many life changes that happen. When our...
