gegtoter@gmail.com                              (845) 641-8240

Youth Ambassador

CPVT (Unknown Mutation)

Volunteer Since: 2004

Interested in: Support Groups, Phone and email support, Speaking at Conferences, Youth Support, Website help

Languages Spoken: English

Bio:  When I was 7 years old I suffered a cardiac arrest and thankfully was saved by paramedics. I was later diagnosed with Long QT Syndrome, something my family had never heard of before. After testing was done it turned out I'm the only one in my family with it. The next year I was implanted with my first ICD. Over the last 19 years I have had them replaced six times due to problems ranging from lead fracture, random component failure and a device recall. I have received four inappropriate shocks all of which I was fully conscious of and two appropriate shocks, which saved my life. I still take beta-blockers and though it might not seem so from my description, I lead a very normal life. Although I was forced to stop playing competitive sports, I still swim as often as I can. I was rediagnoised with CPVT in 2015 after several years of having my condition called idiopathic VF, as the inital Long QT diagnosis was thought to be incorrect. It turns out I had so many negative DNA results, and my QT interval was never prolonged. This lead my doctors to investiage other causes. Right now CPVT seems to be the one that makes the most sense. Being diagnosed with Long QT and then CPVT has actually had a very positively effected my life it has directed my interests towards medicine. I am going to Pace University and will graudate in May with a Bachelors of Science in Nursing and will get my RN. I also have a first degree in Chemistry  from the State University of New York at Geneseo. It has also given me a perspective that puts many of the trivial problems of day to day life in a light that makes them seem much more insignificant and a lot easier to handle. I've lived with what I thought was Long QT and now CPVT for what to me seems like my whole life now and If you have any questions about living with them,  or especially about living with an ICD or anything at all I'll be more than happy to help as best as I can.