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...
by Jillian Cheape | 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 Lisa Peterson | 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...
by Danielle Mundondo | Apr 3, 2019 | AEDs, Long QT Syndrome, Parenting
She appears “normal” and healthy on the outside. She does everything your 4 year old does. She laughs the same. She throws a temper tantrum the same. She thinks potty humor is the funniest thing ever just the same. She comes into your room 20 times every night before...
by Michelle Berg | Apr 3, 2019 | Long QT Syndrome, SADS Spotlight
Name: Jaren BergAge: 10Which SADS condition do you have? LQTS Type 1 When were you diagnosed? November 2017 at age 9 How are you treated? Nadolol 40mg, Left Cardiac Sympathetic Denervation, ICD How/when were you diagnosed?We went to Mayo in November 2017 for a second...
