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When something unusual came up on Amy’s ECG in 2019, she was anxious about what could be wrong. She was having panic attacks and feeling very low, and “not knowing what was wrong made [it] worse.” Amy waited 11 long months for her genetic test to come back, which revealed Long QT Syndrome Type 1. Getting a diagnosis helped Amy’s anxiety: “I’ve just learned that life is short and I’m so lucky to have found out the way I did.” Read Amy’s story to find out more about her diagnosis journey and what she’s learned from having a SADS condition.  

Name: Amy

Age: 29

Which SADS condition do you have? Long QT Syndrome Type 1

When were you diagnosed? 2020

How were you diagnosed?

Back in 2019 my doctor at the time wanted to do an ecg as I never had one before in my life and just wanted to check on things. He found that my QT was very long and didn’t like it so took me off of medication I was on at the time to see if that would help and unfortunately it didn’t. Then things kind of went downhill for me. I started having fainting spells and didn’t know why they were happening and I constantly had palpitations that would keep me awake at night. So then after a couple of E.R/hospital visits they wanted to investigate further as they weren’t happy with the ecg results I was getting. Then the anxiety of not knowing what was wrong started and it was the absolute worst time of my life. I was afraid I was going to die. I wouldn’t leave my bedroom and I had between 10-15 panic attacks a day. I was so low that I didn’t even have any concept of my own hygiene and I didn’t care about anything. I was then diagnosed with Generalised Anxiety Disorder, Manic Depression and Agoraphobia. So things we very bad for me for months and the not knowing what was wrong with me made me worse. I was constantly sick (vomiting and just generally felt unwell) and then after a fainting episode I ended up in hospital and had to stay for 11 days as I was very unwell. That’s when the ball got rolling in diagnosing my Long QT Syndrome (Type 1). Being in hospital was the loneliest I’ve ever felt. I wasn’t on any anxiety medication as my ecgs were abnormal so the cardiologist in my hospital finally started me on anxiety medication and a beta blocker while they were figuring what was wrong with me. I had all the tests, a stress test, an echo of my heart, holter monitors and many of them. Then I finally had genetic testing done and had to wait 11 months for my results. I got my results in November of 2020 and it came back as positive for Long QT Syndrome Type 1 with the KCNQ1 gene and they think I may be the only one in my family to have it. So basically it just started with me. Ever since then I’ve accepted my diagnosis and I’ve been a lot better with my anxiety and depression.

What have you learned from your diagnosis?

I’ve just learned that life is short and I’m so lucky to have found out the way I did rather than having a Cardiac Arrest as my first symptom.

How has the SADS Foundation been helpful to you?

I really enjoy the lives that SADS does every week on Facebook and YouTube as you can ask Dr. Ackerman or other doctors questions which I have found to be very helpful.