SADS Spotlight: CJ
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...
read moreSADS Spotlight: Brody
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...
read moreLIVE-LQTS
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...
read moreSADS Spotlight: Joey
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 were you...
read moreSADS Spotlight: Alexis
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...
read moreLQTs, 504s, & AEDs
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...
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