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Genetic heart testing...what would you do?
maidinscotland
Posts: 5,648 Forum Member
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So my husband has been ill for 3 years now and was misdiagnosed for 2 years (they initially told him he had myeloma, then M.E then M.E and fibromyalgia). He was on a cocktail of medication for M.E/Fibro and was rushed into hospital in February and they diagnosed heart failure. He had actually been taking medication for his supposed ME/Fibro which is unsuitable for heart failure patients! Totally let down by the system methinks but he is not looking to fight a lawsuit as we both realise this would be a mammoth task.
Anyway, we have recently had results of his genetic testing and it shows that he has a rogue gene that can cause cardiomyopathy (ie heart failure). His dad and granddad died of heart problems so I suspect it has come down the male line but they are going to test his mum to rule out the maternal line before then testing my 3 sons who each have a 50% chance of having the gene.
I discussed this with my sons who want to be tested and initially I thought this would be a good idea too (forewarned is forearmed as they say). However, someone pointed out to me today that if it comes out that any of them have the gene then it could affect insurance applications, mortgage applications..all sorts for the rest of their life. I hadn't thought of this! My sons still say they want tested (my eldest is 18 in December so it really is his decision) but I am dubious now. Obviously I am hoping for the best possible outcome and that none of them have the gene but I am now thinking that we are maybe better off not having official clarification if it is going to affect their lives adversely when they are applying for policies, travel insurance etc.
What would you do?
Anyway, we have recently had results of his genetic testing and it shows that he has a rogue gene that can cause cardiomyopathy (ie heart failure). His dad and granddad died of heart problems so I suspect it has come down the male line but they are going to test his mum to rule out the maternal line before then testing my 3 sons who each have a 50% chance of having the gene.
I discussed this with my sons who want to be tested and initially I thought this would be a good idea too (forewarned is forearmed as they say). However, someone pointed out to me today that if it comes out that any of them have the gene then it could affect insurance applications, mortgage applications..all sorts for the rest of their life. I hadn't thought of this! My sons still say they want tested (my eldest is 18 in December so it really is his decision) but I am dubious now. Obviously I am hoping for the best possible outcome and that none of them have the gene but I am now thinking that we are maybe better off not having official clarification if it is going to affect their lives adversely when they are applying for policies, travel insurance etc.
What would you do?
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Well thanks for your reassurance, it's seize by the way.
Taking advantage of fee healthcare? Yes it's sad that the NHS is in danger
I did lots of tests a few years ago when I had some problems that they couldn't get to the bottom of. Once you have a diagnosis everything becomes easier and you stop imagining what terrible things it might be. In my case the reality was far less worrying than the things I imagined. In fact, the worrying significantly increases stress which adds to the problems (or did for me).
Of course, it is their decision in the end, but in their place I'd rather know.
I am v sorry about your husband. I myself have heart failure, diagnosed last December. Like you, I wasn't altogether happy with how long they took to diagnose it. However, the main thing is they did in the end.
I hope you and your husband have realised by now that heart failure doesn't have to rule your life, if he follows all the advice, takes all the medication he's been prescribed etc. My own cardiologist is delighted with the improvement in me.
Of course, it's personally up to each of your family members whether they get tested. However, I myself would, in their position. Nothing is as important as your health. If one of your family DID have the gene for it, it would be so much better to find out BEFORE becoming really ill (like I was).
My mum, brother and sister all got tested, were all negative and now have that weight off their mind. It also means my brother's and sister's children haven't got the gene, which is a big relief for their parents.
I really do feel for you and wish you and your husband all the best.
Moll
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To the OP: I would get tested. Ignorance is rarely better than knowledge.
As for your sons, and regarding insurance, whether they go for genetic testing or not, family history will be taken into account, unfortunately. So it is far better they get tested and know one way or another, whether they, too, have the rogue gene. Insurance companies will quite possibly request medical evidence before underwriting any policies.
I wish you all well, whatever you decide to do.
I am a great believer in accepting screening when available, knowledge is power.
Yes if there are ways to try and prevent it by acting early surely that is the best thing to do.
We had a consultation with the genetic counsellor today and she clarified a few things for us. Firstly, she said that all insurance forms ask if your parent or family have a history of heart disease but no-one is allowed to ask if you have been genetically tested so that got rid of that concern for us.
She also confirmed that the condition my husband has only presents itself in adulthood (and then not always, she reckons my husband's virus that he had 3 years ago triggered the rogue gene). She said that the hospital advocate not to have children tested because it takes the decision away from them and they believe that it should be their decision when they are old enough (finding out now would not give us any 'head start' as there is nothing we can physically do to prevent anything if the condition is going to present itself). She also cited examples of families who have had the genetic testing and wish they hadn't because they can end up viewing an affected child differently and wrapping them up in cotton wool. My eldest son who is coming up for 18 is to have a consultation with her (he is adamant he wants to know) and she will give him more info at that consultation and then it is up to him if he wants to be tested or not. The fact that he is very sporty and is embarking on a career of sports coaching means that she is of the opinion he perhaps would be better knowing.
Our two youngest children (aged 9 and 12) have to be clinically screened once a year (ie ecg etc) to check they are still fit and healthy and, if any cause for concern, then they can act accordingly. My husbands brother, sister and their children have all been given forms to complete to decide if they wish to be tested or not.
So, the way things are at the moment, it looks very likely that my oldest son will opt to be tested and that we will let our two youngest decide when they are old enough if they want tested or not and in the meantime they will just be clinically screened each year. The extended family will need to decide for themselves what they want to do.
Thank you