Name: Jaclyn K.
Which SADS condition do you have? LQTS1
How are you treated? Treated with beta blockers from age 14 and AICD implant at age 24 (on my 4th device currently)
When were you diagnosed?
I was CORRECTLY diagnosed after 9 yrs of fainting and multiple misdiagnosis at age 14. I had been dehydrated, too thin, middle child trying to get attention, having seizures, anxiety attacks, etc. Meeting Dr. James Perry was probably the best thing that ever happened to me! It took 19 fainting episodes, one which required full CPR, to finally get the right diagnosis. I shudder to think that I might not have woken up from any one of those. I am lucky indeed!
What has been the biggest challenge you’ve faced in living with your diagnosis?
The biggest issue I have had is learning to not let my anxiety get the best of me. I try to keep it in the back of my mind as a precaution but not let it run my life. This is still a daily struggle for me. I also swore that since my genes mutated and this was not inherited that I would have it END with me! I was fortunate enough to not pass it on to my daughter. However, it was a very difficult decision to make to not have additional children and risk passing it on. It’s something that I still struggle with but understand was the right decision for me personally.
What is one positive thing that has come out of your diagnosis?
Having this has made me stronger than I thought I could be. For years I lived in constant fear that I would faint again at any moment since so many different things triggered it. I felt like I was a ticking time bomb and hesitated to enjoy life, waiting for something to happen. Now that I am controlled well on medications I’ve become much more in tune with my body and recognizing things that bother me vs. what I can handle. I do tend to err on the side of caution and not do things that could provoke me. Fainting is not fun and getting shocked is definitely not fun. I feel like I’ve gotten to the point where I I’m living my life the way I want to with no regrets but also doing it safely.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
Being diagnosed may be hard to hear but it’s actually the start of the next step. LIVING with it once you know what you’re dealing with is so much easier. When I was diagnosed there was no Facebook and I was introduced to a few penpals that had very different stories than mine. They had the same condition but most were asymptomatic with little to no restrictions. Utilize the resources on the SADS website and reach out to others on social media platforms and groups! Feeling like you are not alone in this is priceless. Being able to compare stories and talk to people with it has been immeasurable for me and my experience with living with this.
Side note, I am on my 4th device in 15 years. My leads have cracked several times and the actual device has migrated downwards in my chest resulting in them needing to be adjusted or replaced. I’m really looking forward to this current device lasting much longer! Knowing that these can mean lifetime ‘maintenance’ but also be a blessing as a backup is tough but I know is the right thing for me. Even on medication my QT interval is generally in the mid-to-high 500 range. I was told once that the condition is very strong in me but that my heart is also very strong and fights back. I feel like I’ve been given now 20 chances and have woken up with each…but do not want to ever risk not having a backup. The devices have been a very emotional thing for me but definitely something I will continue with.