Name: Jaren Berg
Which 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 opinion on uncontrolled seizures and the neurologist asked for a cardiology consult. His ECG showed extremely prolonged QT. He was hospitalized immediately and during his 12 day hospital stay he was diagnosed, started beta blockers, had a LCSD and ICD placed. Genetics came back for LQT1 a month later.
What has been the biggest challenge you’ve faced in living with your diagnosis?
The beta blocker makes to harder to keep up with friends.
What is one positive thing that has come out of your diagnosis?
More family members have been diagnosed- 11 total including Jaren and his dad. It has also brought more awareness of LQTS and other causes of sudden cardiac arrest in the young to our community.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
Jaren says “Just keep being a kid! Don’t let it get you down! Don’t forget to take your medicine!”
What does your day-to-day life look like?
No different than any other kid, except he has to take a daily medication in the morning.
What are your favorite hobbies and activities?
Riding bike, video games, hanging out with friends, playing piano and drums, golf
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