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 had had several fainting episodes, but was never given an EKG until it happened to my brother and he was found to have LQTS.  Knowing that it is a genetic condition, the electrophysiologist ordered EKGs for my entire immediate family.  My mom was diagnosed at this time as well.

Through this experience I have learned to be an advocate for myself as well as my daughter.  Long QT Syndrome is gaining more awareness, but there are many times doctors overlook the diagnosis and attempt to prescribe medications that could cause serious complications.  Being educated and vocal during times like these can literally save a life.

A big challenge that I have faced since my diagnosis 25 years ago is anxiety.  I have had to learn to live with the fact that many things are out of my control.  As a young girl in high school and college, I went from feeling invincible to incredibly fragile.  I felt alone and like I stood out in a terrible way.  I also went from being very physically active to being afraid to even walk too fast.  It has taken many years and a great therapist to be able to separate the things about this condition (and life) that I can and cannot control.  I concentrate on having a positive attitude when speaking with Avery about it.  It’s so important to me that I don’t pass down any of my anxiety to her.

If I could give advice to someone who has been newly diagnosed with Long QT, it would be this: concentrate on the things you have control over.  Take your medication, keep your cardiologist appointments, speak up and educate people when necessary (even medical professionals), and realize just how lucky you are to be aware that your heart beats a little bit differently.

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