As I have it & take amiodarone...

[BenThom-Wood]

Hi,

Why not?

[Helen_BHF]

Hi, this is probably a question for HealthUnlocked. You can contact them at [e-mail] . Thanks!

[BenThom-Wood in reply to Helen_BHF]

Thanks Helen. I appreciate that my cardiac failure nurse has never met a channelopathy patient before at my age & fitness levels I’d’ve thought this forum could’ve been setup more adequately with something which is mentioned in a BHF booklet on living with inherited diseases? There’s 4 different syndromes across the 3 channels but it’s just a drop down box here?

[MichaelJH Heart Star in reply to BenThom-Wood]

Why not start a new post including Channelopathy in the title line. You can then put more details, medications, etc. in the main body.

[BenThom-Wood in reply to MichaelJH]

Well Michael, I expected better than having to do this.

[BenThom-Wood in reply to BenThom-Wood]

It was part of the setup of my profile in this forum & therefore what level of support can I expect if there’s no idea about what I’ve got?!

[MichaelJH Heart Star in reply to BenThom-Wood]

There are approaching 14,000 members on this forum with a vast range of heart conditions although some are partners/friends of heart patients. So why not post and see what response you get.

[MarSeven]

Are you trying to add that condition using a mobile device? I have tried unsuccessfully to add a few conditions and interests that I have seen on other people's profiles but for some reason it won't recognise any of them, all routine stuff like Aortic Valve Replacement and Diuretics etc. I haven't tried my PC yet but just because your condition cannot be added to your profile doesn't mean that it isn't acknowledged here, more likely to be a bug on the page set up.

[BenThom-Wood in reply to MarSeven]

I reported to support that channelopathy couldn’t be inserted to my profile here. Hema has apologised & had a word with the tech team to have it added here. Tba

[Milkfairy Heart Star in reply to BenThom-Wood]

My specific heart conditions are not listed either.

I am not unduly concerned as I make up for it in my replues😂

[BenThom-Wood in reply to Milkfairy]

Try emailing [e-mail] & ask them?

[Milkfairy Heart Star in reply to BenThom-Wood]

It is not an important issue for me.

We are all heart patients here with a specialist subject of living with our condition .

I am me not my condition.

[MarSeven in reply to BenThom-Wood]

Good outcome. I have just been able to update my own health interests on my profile using my mobile so thank you.