Looking for suggestions

[Pamz]

My daughter just rec'd her icd - her symptoms always have been problems breathing, heavy chest. I had mine placed several months ago, extreme bradycardia and extremely high heart rate while exercising.  My son had his 2 years ago after he suffered sudden cardiac death and, my cousin's son is being checked out, he's a wrestler and failed his physical and then after passing,had surgery and had bradycardia and low blood pressure during surgery.  And, worse thing, my brother passed from an unknown cardiac arrythmia.  Except for my brother and cousin's son, we've all tested with a genetic defect of the gene scn5a at tyr87.  Short qt is what is sort of showing up on the ekg.  The defect is unknown.  My question is this, how do we find a way to get a study going, find out if more people have this or just us and find out what might be a way to fix this in the future.  Does anyone have answers to this?  I know it's stupid to ask since we know how to stay safe, with an icd but that is hard on the kids and now, my kids don't want to have kids because of this..

[Pamz]

Thanks, never heard of that one!

[grendslori]

My advice would be to have your cardiologist give you a referral to the National Institutes of Health and see if they may be able to help you.