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Old 21 Oct 19, 07:24 PM  
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skalexander
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Genetic Heart Testing

Does anyone know anything about having it done?

My Dad has cardiomyopathy. It seems it may be hypertrophic but he isn't sure. He's been seeing the cardiology department here but was recently sent to Liverpool Heart and Chest for scans, and will henceforth have appointments there instead of here. When he saw the consultant at Liverpool last week, he was told that his children should be routinely screened from the age of 30, as there is a good chance we have inherited the gene which causes his problem.

This is the first he had heard of it being genetic (we assume it came from his Dad, as he had heart disease for years) or us being checked over. I'm 33 in December, so Dad is anxious for me to get into the system.

However, I was reading online can you can have genetic tests for inherited conditions such as this. However, I couldn't see anywhere where they are offered privately. Does anyone know anywhere that offers this? I'm happy to pay - if I've got the gene, I have a solid basis for asking to be monitored and if I don't then its one thing less to worry about.

Thanks!
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Old 21 Oct 19, 07:30 PM  
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munmun
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Some things to consider.

Once you have been screened for a genetic condition you need to declare this for any life Insurance/ mortgage type policies.

Having said that my mother died of hypertrophic cardiomyopathyopathy and I am regularly screened, echo and consultant appointment.

My mothers blood was screened for all known genes before her death but none were found of course that doesnt mean that there is no mutation.
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Old 21 Oct 19, 07:48 PM  
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Off2Neverland
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Hello, the gene in our family was found and funded for by the NHS. A blood test then clarified who carried it and who didn’t. Yes this helped keep a close eye and this was done for more than 20 years and each time we were told we were clear. Last year however we had an MRI instead of the usual ECG etc and it detected the condition (hypertrophic cardiomyopathy) in 2 family members. It has been life changing as we generally thought to get to our 30s and 40s and be clear we would be ok, sadly not the case. Good luck
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Old 21 Oct 19, 09:15 PM  
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JoJim
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There’s a charity called CRY (cardiac risk in the young)
They offer screening for heart conditions for people aged between 14-35 years.
Well worth looking on their website for more information.
Everyone between those ages should have the screening done, it’s free and could potentially save lives. I urge everyone who can, to have this done. We sadly lost a very dear friend at the age of 25 to an undiagnosed heart condition ❤️
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Old 21 Oct 19, 09:27 PM  
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skalexander
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Originally Posted by JoJim View Post
There’s a charity called CRY (cardiac risk in the young)
They offer screening for heart conditions for people aged between 14-35 years.
Well worth looking on their website for more information.
Everyone between those ages should have the screening done, it’s free and could potentially save lives. I urge everyone who can, to have this done. We sadly lost a very dear friend at the age of 25 to an undiagnosed heart condition ❤️
I’ve had this done before, nothing came up. I could have it done once more if they’d let me but after that I’ll be too old. So I’d need the NHS to screen me as there’s no private heart people here.

My understanding with the genetic testing was it would tell me if I’ve got the gene, and I could only develop the hereditary cardiomyopathy if I did have it. It wouldn't stop non-hereditary issues, but the highest risk factor I have seems to be from this issue Dad has. Perhaps I’ve misunderstood?
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Old 21 Oct 19, 10:22 PM  
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Colette-S
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Not sure if this is any help to you Kate but I’ve had my kids screened. No history but just aware of the risks. They were screened on a session run by c.r.y.org.uk and we made a donation
c-r-y.uk/screening/

Edited to say I’ve just noted posts above!
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Old 21 Oct 19, 10:24 PM  
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Colette-S
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Originally Posted by skalexander View Post
I’ve had this done before, nothing came up. I could have it done once more if they’d let me but after that I’ll be too old. So I’d need the NHS to screen me as there’s no private heart people here.

My understanding with the genetic testing was it would tell me if I’ve got the gene, and I could only develop the hereditary cardiomyopathy if I did have it. It wouldn't stop non-hereditary issues, but the highest risk factor I have seems to be from this issue Dad has. Perhaps I’ve misunderstood?
Why not make a private appointment with your dads consultant and see what he suggests or who he recommends?
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Old 22 Oct 19, 06:32 AM  
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disney_l81
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Try contacting Craig's heartstrong foundation, they may be able to point you in right direction, as they are local to you they may be able to offer more specific local advice.
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Old 22 Oct 19, 08:52 AM  
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skalexander
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Originally Posted by Colette-S View Post
Why not make a private appointment with your dads consultant and see what he suggests or who he recommends?
Dad's consultant is in Liverpool, so I've got to pay flights and a private fee, to quite possibly get no answers.
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Old 22 Oct 19, 09:22 AM  
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Colette-S
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Originally Posted by skalexander View Post
Dad's consultant is in Liverpool, so I've got to pay flights and a private fee, to quite possibly get no answers.
Can you have a telephone consultation? You don’t want to waste money and time on travel but if it could be money well spent either by putting your mind at rest or diagnosing you and putting you on a treatment/management plan
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