by kymera_editor | Jan 9, 2019 | Long QT Syndrome, SADS Spotlight
Lauren and Avery Hannah Ages: 38 and 7 Condition: Long QT Syndrome Type 1, I was diagnosed at 13, Avery was diagnosed at birth. Treatment: We are both treated with Nadolol. I was diagnosed by EKG after my brother had a fainting episode while playing basketball. I...
by kymera_editor | Jan 4, 2019 | Conference, CPVT, ICD, Sudden Cardiac Arrest
Read Kennedy’s previous post for the first installment of her story. January 23rd. Some recognize this date as the day Richard Nixon announced an accord to end the Vietnam War, or the day LeBron James became the 7th and youngest player to reach the 30,000 NBA point...
by kymera_editor | Dec 20, 2018 | Camp, Connecting with others, CPVT, ICD, Long QT Syndrome
Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California. You see, I was in the midst of trying to digest the fact that my daughter had this thing called Long QT Syndrome and CPVT (yep—both) and that she had...
by kymera_editor | Dec 17, 2018 | ICD, Long QT Syndrome
I have a life threatening heart condition called Long QT Syndrome (LQTS). I have an implantable cardioverter-defibrillator (ICD), a small electronic device implanted in my chest, under the muscle just below the collarbone. Its main function is to prevent sudden death...
by kymera_editor | Dec 4, 2018 | Conference, Long QT Syndrome, SADS Spotlight
Mama’s house is gone Fragments remain as part of That once vital family I am one of those fragments My name is Mary I have a story to tell Dirt road, uninsulated house, outhouse, wood stoves- one for heating, the other for cooking, water from a pump nearby. The...
