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Genetic Counselling: Has anyone had a genetic test for any familial dementia?

Muggles

New member
Jan 20, 2019
9
Thanks a lot Muggles, all that info really helps! I'm going up to a support group in London next week so I'll ask the dementia adviser who referred me whether she's had any news as to how long it will take for me to get a meeting set up. My next genetic counselling appointment is soon but based on all your info I think I'm definitely better off putting off the decision and having the meeting at UCL first. Thanks so much!
No problem, glad to help and good luck!
 

AliceA

Registered User
May 27, 2016
2,706
Genetic counselling

I'm 61 and had my stroke ten years ago, followed by a series of what I was told at the time were TIA's; because of the frequency with which these episodes were occurring and the fact that I had to take 18 months off work because of it, my then GP suggested I have a special blood test to see if I carry the gene for hereditary Alzheimer's' disease. It wasn't thought likely as there's no history of stroke so far as I know on either side of my family tree but this was 'just in case'. I was quite positive at the time that IF I carried the gene then I'd want to know as soon as possible so I could prepare myself for what was likely to happen in years to come.

Apparently there's only the one hospital in the whole country that does this specialised blood testing (it's in London, I believe) so my GP took a blood sample which was sent off for testing. After a very anxious wait I was told that because of my family medical history they weren't proposing to test me any further so I presume this means I don't have the defective gene :) .

What would have happened if I were found to carry the defective gene I don't know, but I do believe in being as informed as possible which was why I would have wanted to know if anything was wrong with me - simply so that my family (my now ex-husband and then teenage daughter) would be aware of what would be likely to happen and how any disease would be likely to develop. Not everyone wants to know bad news like this, but I wanted to be prepared for any eventuality.
Many of us do want to be prepared for all eventuallties but we never can, Life always has a few Jokers in the pack. Xxx
 

PalSal

Registered User
Dec 4, 2011
806
Pratteln Switzerland
Hello,
I am going to be starting genetic counselling soon to find out if I carry the gene for familial Frontotemporal Dementia, which runs in my family, has anyone had expereince of genetic counselling before?

Would love to hear from you and about your journey if you would be interested? Also looking to maintain this thread for support for anyone going through similar?

I am 31 and have two children (9 and 5 yr old).

Thanks for reading.
@Toughmother..
My husband has Early Onset Alz. which was diagnosed at 49. (He was symptomatic long before that) Two of our children are doctors and together the kids have decided they do not wish to be tested, although it is suspected but conclusively to be congenital. It is my understanding , there is no single gene but numerous genes involved, not like Huntington's Disease, where it is repeats on a single gene and completely predictable from a blood test.
I was tested for Huntington's as three of my four siblings have it....also no cure and horrific. Here in Switzerland, we were required to attend three sessions of counseling here before they would test me, and there was a three month contemplation waiting period required before they would test.
Only two nephews of the total of 5 possible affected children of my siblings have been tested. the is a 50/50 chance with HD of getting the disease. If one has the gene, one will 100% get the disease. I do not know the rules if any in the UK. Blessedly, for my children I do not have HD.
Perhaps you would find these Ted Talks interesting.

a different approach
https://www.ted.com/talks/alanna_shaikh_how_i_m_preparing_to_get_alzheimer_s

Good luck.
 
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Welshblack

Registered User
Aug 9, 2015
26
Anglesey
Hi @Muggles and @Welshblack thank you so much for your answers - I'm so sorry to hear you have the genes, but your answers have helped me be more positive about it. I didn't know you could ask for it not to be on your medical record - is that because you had the test done at UCL rather than within the NHS and will they tell you the result they just won't store it on the medical record? How did you both get involved with UCL? Someone has forwarded my details to a Dr Jon Rorher and hopefully I'll get to have a chat with his team before I make any decisions on the test, I believe he might be at UCL actually.

@Welshblack I haven't actually found the genetic counselling very informative about the negative implications of a positive result, they told me essentially there is a moratorium in place (currently until end of 2019 but is normally extended every couple of years or so) on insurance companies that they could not ask you outright about whether you had a genetic test (as long as the amount covered was below a certain amount) but that I should get whatever insurance I wanted before, as although they can't ask me, there is a section where you can disclose information, so it might fall back on me if I didn't disclose it voluntarily when buying the product, and for mortgages they said I'd need to speak to the solicitor at the time to get advice.

Have either of you had reason to regret having the test (apart from obviously knowing!), such as being treated differently for financial loans etc?

Thank you both x
Hi again, I don't regret going for the test because I'm near the age of onset but I do regret telling my work boss, I told him in March and because he told his insurance company I've been off work since October....I work for a construction company so it's high risk but I told him so he could analyse me.....He has been paying me though up until 2 weeks ago but says now he can't afford to and asked if I wanted sick pay but I told him I'm not ill.... I'm looking into the legal side of it now
 

crazyerduck

Registered User
Jan 3, 2019
22
oh @Welshblack that sounds awful particularly if you don't have any symptoms yet, the age of onset can vastly differ from person to person too and it won't develop in one go.. I hope you are getting some help with looking at the legal side??

@PalSal sorry to hear about the huntingdons in your family. I have heard that research in that area is progressing so fingers crossed for your family!
 

Welshblack

Registered User
Aug 9, 2015
26
Anglesey
oh @Welshblack that sounds awful particularly if you don't have any symptoms yet, the age of onset can vastly differ from person to person too and it won't develop in one go.. I hope you are getting some help with looking at the legal side??

@PalSal sorry to hear about the huntingdons in your family. I have heard that research in that area is progressing so fingers crossed for your family!
Yes I'm in the process of getting information