A Home Away From Home, A World Away
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...
read moreSADS Spotlight: Aurora
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?...
read moreSADS 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...
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