Would you test/ have you?

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Phoebe
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Joined: Thu Nov 26, 2020 2:57 pm

Would you test/ have you?

Post by Phoebe »

This article (https://www.reuters.com/business/health ... 023-04-21/) considers the issue of testing for genes for Alzheimer's disease, and takes as case study a particular woman who was tested after her mother died of the disease.
Initially, It describes the psychological complications of finding out that type of information, often without having adequate explanation or support to help you through it. But it also describes ways that she and her family have changed their lives as a result, in ways that seem rather beneficial?

Looking just at individual experiences like these leaves me wanting more of that information rather than less. But at the end the article briefly touches on the things I'm worried about if that information can be acquired or required for disclosure. What if your insurance changes, or the nursing home charges you a higher rate, or the assisted living facility won't let you in because they assume that's in the future?

So I'm curious if anybody has done testing like this or if you would. The things I expect to happen to me are not necessarily Alzheimer's but I know the incidence is on the rise. I do expect to have other kinds of problems that might involve neurological deterioration, but so far it has left the cognitive portions of the mind intact while the physical control goes off the rails. So I think about whether I'll be content having very bad physical sensations and not being able to move, but I'm still sitting there thinking In a similar way? We don't know our fate thoygh... Could be hit by a bus; could be one follows the path of some other grandparent or parent who didn't have these issues. I don't think the popular companies can do genetic testing for the things I'm worried about; I'd have to go to a specialist and they were like, ehh, even then we don't really know. But I'm also curious about whether there is a good company that does this type of genetic testing. Many of my husband's relatives have done it and therefore claim to have insights into their various genetic histories. I don't know if I even trust these results, because when you compare them to one another the picture doesn't quite add up.
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Eliahad
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Re: Would you test/ have you?

Post by Eliahad »

I have done genetic testing for Cystic Fibrosis, which I now know I have. Not the classic version, but I have it. If I had know about it thirty years ago instead of say, last Friday, I could have taken some steps to actually treat the disease and not live with constant sinus infections and grossing out all the people around me. I am finally, slowly, able to take steps to work some of these things out. Also, I now know that my pancreas and liver might have decreased function and that I should be monitoring these things. I'm currently dealing with the psychological effect of understanding what I've been dealing with my entire life. I am finding I would want to know things sooner. Not later.
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Phoebe
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Re: Would you test/ have you?

Post by Phoebe »

It's really good you were able to find that out and have some answers and clarity. Perhaps in the future it will be even more important and you'll have different options.
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