Rare conditions and Heart failure at 34

[Amy_jean]

Hi..

I'm 34 and just be diagnosed last week with heart failure myself and son both have Catecholaminergic polymorphic ventricular tachycardia (cpvt) and andersen tawil syndrome and already fitted with a pacemaker and defibrillator... I'm struggling a bit to deal with the fact they have heart failure my son is only 12 I want to watch him grow up I don't understand and how it's gone to this extreme I've never felt more fit and healthier now now but I have done in the last 4 years but somehow my heart seems to be getting worse this is going to be one of the hardest things to get my head around let alone finding the words to tell my son.. people are trying so much to be nice and try and say the right thing but I don't think they understand because I don't even understand

[Hidden]

I am sure you have done your homework on this inherited condition. However, this might help. bhf.org.uk/informationsuppo...

[Speakeazi]

I am so sorry to read your message. Might it help to talk to a professional about your feelings and how to talk to your son. And even how to talk about it or not with others.

Try calling the nurses on the BHF helpline - they may be able to point you in the right direction.

Bestest of wishes.

Sara