Hi, I was diagnosed with Long QT Syndrome 27 years ago. I have LQT1 and have the KCNQ1 gene mutation. I lost both members of my family who also had this condition, sadly, prior to diagnosis. It was indirectly suspicion arose though their young and untimely death that saved my life. I have an ICD and take Atenolol and Verapamil meds. I also run an online support group, different to this one and feel that there can never be too much support as its only accepted and taken when required. The beauty of online.
The group I run is Facebook based at present, has 400 members and has been going almost 4 years. Feel free to take a look. The link is facebook.com/groups/life.wi...
It is LQTS specific but have many discussions around ICDs. Etc
I have extremely good doctors and cardio logical team and the pacing department is second to none...I don't say this just because they are involved in the arrhythmia Alliance group a good group of professionals is worth absolutely everything to someone with a chronic condition. I hope to hear from some of you and please feel free to drop in bye for now x