Introducing myself and wondering if anyone else has this genetic condition

[boredom]

Does anyone else suffer from this condition and how are you treated and does it progress

[VelvetSky]

Hi welcome, I’m a bear of little brain but I don’t understand what actually your genetic condition is?

[Hidden]

Hello & Welcome

I to do not know what your genetic condition is

If you could expand a little and tell us more I am sure there will be some members that will relate and be able to give you some feedback x

[boredom in reply to Hidden]

Its callled hypertropic cardiomyopathy if i have spelt it properly didnt know i had it until heart attack until March this year

[Hidden in reply to boredom]

Hello

Thank you for educating me I have never come across this before and had to look it up

If it runs in genetics as it says then it is good to find out so the next generations can be aware

I really do hope some members will have insight and information that they can help you with regarding this there are some really knowledgeable members on here

I hope after your heart attack you are making a good recovery

I hope you have a lovely day x

[boredom]

thanks for your reply told all my brothers 4 to get tested and my grown up children 42 and 45 daughter has 3 children son not married. I didnt expect to be told this at 67 no symptoms before just feel so cut off and alone all my family are in England and Scotland and i live in Northern Ireland. weather lovely and warm here hope you have a good day as well

[Juan61 in reply to boredom]

I have Irish ancestry and have a genetic cardiomyopathy condition which I share with my two brothers. It has also been passed on to one of my 3 children. We all have ICDs fitted. It was found by chance and my dad was discovered to be the source which he had no idea about until his late sixties. Sadly he died from heart failure but he was in his mid eighties then.We are under the care of the team at St Barts hospital in London who are running a study on genetic heart conditions. They have done all the gene testing for us. I wonder if there is an Irish mutation that we have in common…

[boredom in reply to Juan61]

All my ancestors are from Wales dont know who passed it on to me as yet although my Father died of blood clot /heart attack in his 70s now being mine was found by chance also being genetically tested. Hope your keeping well

[boredom]

I am on Artovastin, Lansoprazole, Aspirin,Ticagrelor and Ramipral is anyone else on this this many and do you suffer side effects. I have headaches bruising pain in legs and arms also neck at times fed up with these side effects as I am out of breath if I try to do anything takes forever I do know some of them cause shortness of breath. Am going to speak to cardiologist about this see if he can find something else also have GTN spray if neeeded?.

[Simes11]

Yes, I’ve been on all of these &/or various alternatives for varying lengths of time/years.. & YES, I experienced all manner of pretty terrible side effects, despite all sorts of changing & tweaking doses & drugs. So much so, that for me - ie my personal choice & NOT a ‘recommendation’ to you, et al - I now only take aspirin and have GTN if needed (which I don’t)! 😊

Definitely have a talk with your Cardiologist and work TOGETHER on tweaking things to find out what does & does not work for you. 🙏❤️