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21 Oct 19, 07:24 PM |
#1
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Imagineer
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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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21 Oct 19, 07:30 PM |
#2
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Imagineer
Join Date: May 10
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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. |
21 Oct 19, 07:48 PM |
#3
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First POST
Join Date: Oct 19
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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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21 Oct 19, 09:15 PM |
#4
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Excited about Disney
Join Date: Jan 13
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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 ❤️ |
21 Oct 19, 09:27 PM |
#5
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Thread Starter
Imagineer
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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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21 Oct 19, 10:22 PM |
#6
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Bon viveur and shopaholic
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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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21 Oct 19, 10:24 PM |
#7
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Bon viveur and shopaholic
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22 Oct 19, 06:32 AM |
#8
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Very Serious Dibber
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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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22 Oct 19, 08:52 AM |
#9
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Thread Starter
Imagineer
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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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22 Oct 19, 09:22 AM |
#10
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Bon viveur and shopaholic
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