Long QT Syndrome Support Group

Hey everyone, my name is Bailey and I'm 16 years old, going into my Junior year in high school. I was diagnosed with LQTS a few months ago and I feel like I need to talk to other people going through the same thing. It would be awesome if anyone wanted to talk

Hi darling

My daughter Eleanor was diagnosed at 17. I asked her if she wanted to join this group.She is now 21 and said "all those people have problems with LQTS and having an ICD. I don't and I don't know why I don't" I know she means it. I told her about you and suggested that perhaps she could help you to have the same attitude.She smiled and said she may contact you when she returns from her trip to New Zealand & Thailand in 9 weeks time. We live in Ireland.You can check a world map to see how far she intends to travel. Once you're diagnosed and treated for LQTS you can live a very normal life, knowing that you're protected. X

Hi Bailey. I was also diagnosed when I was 16. I had a couple family members pass away from it, so when I learned that I had to be tested and then was diagnosed, I was terrified. I'm 26 now (27 in 5 days) and I have learned that being scared is normal but it's not necessary. You can still enjoy everything in life as you did before. Just make sure you treat your Long QT as your doctor prescribes and you will be just fine! Be thankful that you were able to be diagnosed and treated before anything bad happened.

Hey Bailey I was diagnosed with Long Qt Syndrom when I was 9. I'm 17 now and I had a defib implanted in my chest on my 10th birthday. I no how you feel about being scared sweet heart. I've had the defib for 7 years and am still scared. Sometimes I dont want to leave the house bt the thing is darling that you dont need to be scared. You can overcome the fear of the medical condition. Everything in your life can be as normal as u make it even after your diagnosed. Yes you will have a few barriers bt so does every1. honestly darling ur one of the lucky ones. Dnt be scared x

Hi there! I was diagnosed after fainting for ten years and being constantly misdiagnosed. I fainted 20x by the time I was put on medication and chose to do the ICD about ten yrs later, as a back up. It's a lot to deal with, physically and emotionally and I think a lot of people forget that part. You deal with it daily though can live a very, very normal life with it. No one knows your body like you do and what your thresholds are, what you can handle, etc. It's a lot, definitely, but if you'd like to talk I would love to! I am 29 and have dealt with this since I was 5, though my genes mutated and I'm the only one in my family who has it.

Hang in there!

Jaclyn