Name: Beth Roy
What SADS Condition do you have? LQT1
When were you diagnosed? 2016
How are you treated? Nadolol (beta blocker)
How were you diagnosed?
I was diagnosed with AFIB and prescribed amiodarone. While gardening, attending a picnic or just brushing my teeth, I lost consciousness several times. After being admitted to the hospital I went into torsades and woke up in the ICU. Genetic Testing confirmed my LQT1. I later understood the red flags; at just 40 my grandfather had a cardiac arrest and I had lost consciousness while swimming as a teenager.
What is one positive thing that has come out of your diagnosis?
Educating myself about Long QT Syndrome has been empowering. When first diagnosed, I scanned the internet and panicked. Now I understand that with simple beta blocker therapy, keeping hydrated and diligently checking CredibleMeds before taking a new medication, I can consider myself good to go. I also had strong support from my nephew who attended appointments with me and asked lots of great questions.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
To those who are newly diagnosed – this disease is a little like a haunted house at Halloween. It’s terrifying in the dark when you don’t know what you are dealing with but once you turn the lights on, it is not scary at all!
What are your favorite hobbies and activities?
I am back to enjoying gardening, reading and spending time with friends.
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