My name is Natasha; I was diagnosed with Long QT Syndrome when I was 24 years old. Sometimes I feel that if it weren’t for going through some of the scariest, most traumatic events of my life; I would not be here today. When I was 10, my mother passed away in her sleep (she was 26). Cardiologists now believe that she had Long QT Syndrome and she was potentially misdiagnosed. Before I was ever diagnosed, without any warning, my little sister had a cardiac arrest in her sleep. She was healthy, fit and an active, normal 16 year old girl and it just didn’t make sense…I am forever grateful that our family was there and found her in time. They performed CPR on my sister and when the paramedics arrived, they used an AED to “re-start” her heart.
She was diagnosed with Long QT Syndrome and received an ICD in case of any future cardiac events. While she was still in the hospital, I was tested and also diagnosed with the same thing. I decided to have the ICD implanted due to being at high risk for a cardiac event. A year later everything seemed to be going well…I didn’t seem to be having any symptoms and I felt fine. I was lying down, reading a book when out of nowhere I felt really dizzy and could feel my heart racing…Then all of a sudden I received a shock from my ICD for the first time due to a cardiac event. It definitely scared me; but on the positive side, it saved my life and was not as bad as I had anticipated. However, it was an eye opener that this was real and I do have to live with it.
We will never be prepared for dealing with, or anticipating these life changing events in our lives, and some days we don’t even want to think about them. I hope that by people sharing their stories, we can build relationships and provide a support group that is truly “connected by heart”. I hope that new members will feel comfortable among this group and will share their thoughts and stories too. Your story may be someone’s inspiration. I know that for me, hearing other people’s stories has made a huge impact and reminds me that we are not alone in our struggles and successes while living with a heart condition. Since my event I have been very passionate about, and participate in helping create awareness about SCA and the importance of CPR and AED’s and preventing SCA in youth. I can only hope that my story can provide some inspiration or at least make people more aware of SCA in young people so that we can help prevent it from happening to others.