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View Full Version : Finding out about hereditary diseases - Catch 22



WorriedWart
13-12-18, 23:38
Evening everyone :welcome:

I've just recently passed my 35th birthday and as I get older I find myself more and more worried about my health - shock horror being in a health anxiety forum :roflmao:

Now, the problem is that I have no real idea about the medical history of any of my family. My mother was adopted when she was very young, with no real idea of her family history, whilst I was quickly removed from the care of my father at a young age (which I wont get into here), with no connection with him or his side of the family for over 25 years.

Because of this, I've no idea if any sorts of cancers etc. run in either side of the family.

I saw online that there is now tests you can do to find out if you are susceptible to any potential diseases in the future through a blood test.

However, my worry is that if I were to do this - were I to get the results back containing some potentially scary stuff, I know my anxiety would go into overdrive as I would fear these and constantly look out for them.

So my question is this: Should I do it? Have you done it? Are there other ways to find this stuff out?

AMomentofClarity
13-12-18, 23:48
Evening everyone :welcome:

I've just recently passed my 35th birthday and as I get older I find myself more and more worried about my health - shock horror being in a health anxiety forum :roflmao:

Now, the problem is that I have no real idea about the medical history of any of my family. My mother was adopted when she was very young, with no real idea of her family history, whilst I was quickly removed from the care of my father at a young age (which I wont get into here), with no connection with him or his side of the family for over 25 years.

Because of this, I've no idea if any sorts of cancers etc. run in either side of the family.

I saw online that there is now tests you can do to find out if you are susceptible to any potential diseases in the future through a blood test.

However, my worry is that if I were to do this - were I to get the results back containing some potentially scary stuff, I know my anxiety would go into overdrive as I would fear these and constantly look out for them.

So my question is this: Should I do it? Have you done it? Are there other ways to find this stuff out?

Personally, as someone who’s battled HA, I wouldn’t touch this stuff. The issue is that for us HAers, a 10% chance of xyz automatically feels like 100%. Plus, in addition to the hereditary illnesses, there’s a gazillion non hereditary things that can strike at any moment.

Unless you have specific concerns/legitimate reasons to be concerned, it seems unnecessary.

Careful1
14-12-18, 02:27
I have done it... I did testing online and I have done testing professionally through a genetic dr whom my primary sent me to. I did these tests because I have never met my biological father but know there is a history of sudden death on his side and because I have been having issues with my heart since I was a teenager among other things.

I am 37 years old and have suffered some serious health anxiety in my early 20s. In a way I think the testing can be a good idea esp when one doesn't have much family history to go on but in someone with known health anxiety I am not sure it's a good idea.
I think the most important thing to know if one decides to have this testing done is that genetics is very complex and even though one may carry certain SNPs or mutations in certain genes that are associated with certain conditions, it does not mean that they 100 percent have the associated condition and may never acquire it.

If you have your genome sequenced, things will pop up and so I think you need to ask yourself if your the type of person that could handle knowing the bad things without it driving you mad. If you knew that you carried a pathogenic SNP that let's say is associated with some type of cancer... Would you be able to accept the information and try to live a healthy lifestyle or will you worry every day for the rest of your life to the point that it effects your happiness and everything else?
If your the type that will worry themselves sick over it, dont have the testing done.

lofwyr
15-12-18, 17:21
There are tests that can be done (at least they were offered to me, in the US) which will only inform you of preventable or treatable genetic disease markers. I have been considering this, primarily because I actually do have a genetic disease, which had I not known about or found by happenstance, which luckily I did, would have killed me.

I did not find that disease via genetic testing, but want to do the test I mentioned. The caveat to this, however, is that my HA is in a pretty solid place right now. I am still really on this forum more to give back for all the support I received over the years, and also to fend off the rare recurrence.

Worrywart84
15-12-18, 18:45
If I didn’t suffer from HA I would say yes this sounds like an excellent idea. But knowing full well how we take information, if anything turned up you would be a wreck and it would cast a shadow of fear and depression over you. I personally wouldn’t do it unless you have a really valid reason.

Careful1
15-12-18, 21:35
There are tests that can be done (at least they were offered to me, in the US) which will only inform you of preventable or treatable genetic disease markers. I have been considering this, primarily because I actually do have a genetic disease, which had I not known about or found by happenstance, which luckily I did, would have killed me.

I did not find that disease via genetic testing, but want to do the test I mentioned. The caveat to this, however, is that my HA is in a pretty solid place right now. I am still really on this forum more to give back for all the support I received over the years, and also to fend off the rare recurrence.

I too have a genetic disease and understand your points.. Still getting these types of tests are complicated. You could carry a known pathogenic variant or a variant that there isn't much information on that are linked to certain diseases etc but it doesn't mean you will have said condition or ever have it later. The most you could do with the information is live a healthy lifestyle and for some get screening more often then you normally would because unless your showing clinical symptoms of whatever if any condition associated with your results you wont be diagnosed on those results alone. Sometimes to much information does more harm then good..

I do suggest if your going to get this type of testing done get it done through a proper genetics dr because not all these labs online that do the testing are always accurate. I have known people who have had testing and get freaked and worried by the results only to have the testing done through a dr and find out the first testing results were wrong.

I personally think if one is healthy and happy there is no reason for the testing unless your just curious and can for sure handle the information. Testing like this has been known to cause great stress and unnecessary worry in people who dont suffer from anxiety and so although you may feel your currently in a good place anxiety wise, what if this triggers it?

eshu55
17-12-18, 22:10
This is probably a very weird response, given that I have health anxiety, but I did an Ancestry genetic test and then sent the results to Promethease to check for the potential of genetic conditions (I did have a moment of panic when hitting, submit). I know that these things can be a bit hit or miss, and just because you have a risk of certain diseases, it doesn't mean you will get them (or that the research is all that definite). Anyway, it told me that I had a slightly increased risk of post menopausal breast cancer...so I immediately booked myself in for a mammogram (which I had been putting off for FOUR YEARS!). I haven't had the written results yet, but afterwards, the radiographer told me I could go, and to come back in two years. Anyway, I figure I'd rather know about something and catch it early!