Genetic heart disease?

[Jenny-wren49]

Hi,

I’m sorry, I’m looking for some help and advice please.

3 years ago my mum died of heart disease, we didn’t know she had it (she didn’t know either) and she died in her sleep. We are heartbroken! I still can’t believe it.

Her mum died 16 years ago with the same disease..

they were both the same age 49.

My mum was the only daughter, her brothers are older and are healthy. My grandad has died but he had repeated chest infections.

My mum has 4 daughters (including me) the eldest is 36.

Do we get tested? Is their a test for us?

Thank you.

[Hidden]

Hi,

I have been diagnosed with a genetic heart disease. Do you know what condition your Mum was diagnosed with?

I have a kind of cardiomyopathy and I have been referred for genetic testing, my kids will be tested when they are old enough. My siblings can all get referred through their GPs. If any of them carry the gene they will receive regular heart check ups. With my disease you can have the gene but may never have symptoms.

Some of my siblings don't want to be tested.

The BHF have a phone line specifically for advice on genetics and they really helped me understand the process and where to start. Here's the contact info bhf.org.uk/informationsuppo...

Good luck!

[Hidden]

You’re in my thoughts, losing a parent is tough and I feel for you, and to worry about your heart is also horrid.

You’re doing the right thing, thinking about this early. Keep exploring the topic, but don’t worry too much. It sounds cliched, but worry really doesn’t help, as stress impacts the heart.

I hope it isn’t relevant for you, but in case it is later, sadly there are sometimes realities we have to accept. I found out age 50 that I had a heart birth defect, and struggled to stop myself thinking ‘why me’ and ‘life’s not fair’ for a while. But when I accepted the bit I couldn’t change (I cant change that they’ve found a hole in my heart), I found I had more focus for what I COULD do (get healthier for surgery, plan my recovery, educate myself).

So maybe you could reduce some worry by splitting things into (a) I can’t control this (eg genetics) and (b) this is something I can do something about (eg if needed, treatment, or either way, general heart health).

Secondly, whether or not you have a genetic predisposition, ( I hope you don’t), there’s everything to be gained by looking at (/ out for) your heart anyway.

Frequently check your blood pressure and take action if it strays high, as this is a major indicator for many health problems. Many GPs have a self-serve machine in their waiting room now. Get your heart checked annually (GP can listen for murmurs etc). Get a well-woman medical if you can, or a check up, & think about exercise, smoking, alcohol, healthy weight, cholesterol, stress management. Be alert for possible Forties hormone changes having an effect on your mood & stress response and hence your heart.

Sorry if this sounds preachy or apple pie, not meant that way, I wish I’d done these things earlier than I did !

So as well as genetic tests, get regular heart health checks too, as this could catch genetic or other issues before they escalate, and/or could help reassure you. Very best of luck.

[Raoudha]

Please check for Lp(a) apoA apoB good luck

[chamoru670]

Yes and no. Reason why I answered that is because some doctors will say you’re too young. You need to force it and ask for opinions and especially if you’re paying insurance. Make sure you tell them you want to get check because it’s best caught early.

Don’t wait until it happens. My husband is 35 years old. He did not have any heart attack or stroke. Just pain in his chest. We’re told he’s fine. But when I demanded a stress test it was positive he has a heart condition. A month later his angeioscan showed 99% clot on the bottom right artery and 95% on the top right artery. He currently has 5 stents on his whole right artery.

If you want to check. Please do. Don’t wait until it’s late.

[Jenny-wren49]

Thank you all some much for your reply’s.

My mum had chronic heart disease, we were told to have test when we get to 40. The problem is, my sister the youngest is already having some heart problems but they won’t test her.

She has heart palpitations, high BP and panic attacks. The same as my mum.

They said she’s to young to be tested.

So we are told to be tested but to wait. We currently can’t see our doctors.

Again thank you all and hopefully when this is all over with, I can try and get some tests sorted out. X

[Frenchbulldogsx in reply to Jenny-wren49]

I have inherited chronic heart disease from my dad, I had a quadruple bypass and asked the question to my cardiologists as I have 2 daughters 22and 31 I was told that they should manage cholesterol and can't be tested until at least 40 and would be put on medication. But my cholesterol wasn't high so it is a worry, we all maintain exercise, nutrition don't smoke or drink.

[Raylpa]

Hello Jenny

Sorry to hear of your loss.

Your concerns are wholly understandably. There are lots of people here who know much more than I do but I will share in brief my story which may be relevant. I had an emergency stent procedure after a sudden artery blockage in 2014 age 57. I was fit, never smoked, very low alcohol use. Not overweight but in retrospect I did have a Typical western diet, too much sugar and salt. As my father and uncles all had heart issues I was concerned there was a family link but even after my incident when I was 999 dashed into the heart unit I was never offered any form of screening. Two years later I happened on a press article about lipoprotein (a) or Lp (a) it is a natural substance in our blood however it is common to have an excess and for some like myself you can have a level 300-400% above normal. It’s been likened to having Velcro on your artery walls, not good! Treatments are being developed to treat this condition but at present nothing in the UK. No treatment doesn’t mean we don’t have a right to know as this increased my CVD factor x3 fold. As a result of knowing I retired early at 60 to reduce stress, exercise more and generally have time to live a healthy lifestyle. I may not have as much income in retirement as planned but that must be balanced on the now known risk factors. Lp (a) is passed on genetically by a parent so my two children had a 50% of inheriting the condition as did my siblings. It’s now evident one child and one sibling have the condition. The test can only be arranged via a lipids clinic. My GP had never heard of the condition and said if my other lipids were ok I didn’t need it! There is no connection between this issue and normal lipid considerations. If you have significant CVD family history without multiple other risk factors, overweight smoking etc then insist on a lipids clinic and Lp (a) testing. Knowing there risk has no informed my brother and son to get ahead of the other risk factors in their 30’ and 40’s and hopefully not find out after a heart attack like I did. Heart UK have lots more useful info. I survived and 5 years later I am enjoying life and feel super fit and well. Good luck and take care.

[Raylpa]

Wow! I have just belatedly read your posting. I do hope and trust you are still well.

We have exactly the same experience!! In 2014 a 999 dash, a stent, no life style issues, but no follow up testing for Lp(a) my better half Carol read a newspaper story about Lp(a) while having a coffee in Waitrose. Had the test 90> mmol/dL not good. My GP said Lp(a) what's that! Son and Daughter dodged the bullet but my brother has my exact Lp(a)

I have keep fit and have a largely whole food plant based diet. I felt I was not firing on all cylinders last year and given the Lp(a) I insisted on visit to a cardiologist who arranged an echo-cardiogram. Unfortunately the scan found heart valve calcification, only first stage but most certainly associated with the Lp(a). The anti-sense drugs, currently on phase 3 outcomes trials in the USA are good news at least. Take care, hope you are ok, do let me know as we are very similar (only I am a man!) and have you have discovered anything else please do message back too.