Cpvt and Andersen-Tawil syndrome

[Flybug]

Hi I'm new to this so here's a little bit about our selfs ..Myself and son both have Catecholaminergic polymorphic ventricular tachycardia (CPVT) and Andersen-Tawil syndrome both fitted with a pacemaker and icd. My son had a sca at just age 6 no signs no symptoms and also being very fit and very sport active rugby ect after a lot of tests he was diagnosed with both conditions above and fitted straight away with a ICD where as I've not had a sca and also being very fit healthy sporty ect. I was diagnosed with genetics testing and having the same gene and both conditions and was fitted rite away with a pacemaker and icd.. my son now 10 is also on 2 lots of medication and has not received any shock from the device . I myself dont take any medication and I've had 2 shocks in 1 week which to my surprise I didn't feel nor did i know as I thought it was a fit even my local doctor said it couldn't of been a shock off ICD as I felt fine didn't feel any type of shock to my chest and was infact a seizure and refuring me to seizure clinic. I found out I the following day after receiving a phone call off my cardiologist that I had received 2 shocks as my heart stop and not had a seizure.... The problem I seem to find and come across with everyday things we all take for granted is not meany people seem to know or understand our conditions and can't seem to find all that much info on them if needed we have no support groups or anything local for myself and son to attend or even any1 to talk to about it apart from. Our cardiologist as they is such lack of information on both conditions... Thanks for reading and I do hope I've not bored u and if any1 in the south Wales has these conditions 0kz get in touch