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 SADS Channel | 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 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 Erin McGuire Clark | 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...
