Familial Alzheimers

Vara

Registered User
Dec 31, 2015
6
0
Hello.

Familial Alzheimers - my daughter aged 33 possibly started already but has had blood test and has her father's gene. How to tell my son? Left it late, he is 30 now but I have know about this for 20 years. Does anyone have any advice?
 
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Izzy

Volunteer Moderator
Aug 31, 2003
73,996
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Dundee
Hello Vara and welcome to TP.

I'm so sorry to read about your situation. I have no experience of this myself but I hope some other members who do will post soon.
 

nitram

Registered User
Apr 6, 2011
30,075
0
Bury
Personally, but depending on his temperament, I would tell him and encourage him to be tested.
You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.

Have a read through
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=168 which includes
 

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Vara

Registered User
Dec 31, 2015
6
0
How about contacting Rare Dementia Support who run the fAD support group linked to UCL?

Thank you very much, I didn't know this website existed, I am looking into it.
 
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Vara

Registered User
Dec 31, 2015
6
0
Personally, but depending on his temperament, I would tell him and encourage him to be tested.
You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.


Yes it is a 50:50 chance he will develop it. He doesn't have children but is in a fairly new serious relationship. I feel I must tell him now but worry I have left it quite late, it was to protect him. I wondered if anyone else has been through this and could give me advice on how to break the news to him.
 

Claire Mary

Registered User
Nov 21, 2016
5
0
Citizen of the planet.
When is the question?

Hello Vara and welcome to TP.

I'm so sorry to read about your situation. I have no experience of this myself but I hope some other members who do will post soon.

My mom passed earlier this year. After indepth investigation, I uncovered that her twin brother had famelial Picks Disease and sister and mother too died of this early onset rare frontotemporal dementia.

I am looking to get tested myself. My husband and I have 12 year old twins.
After much deliberation, I have decided that I need to know for myself as I am 42 now, and still have a way to go before our boys become independent. I am not going to test my children as this will completely devastate me knowing their fate at such a blossoming time of their lives. I choose to rather keep my eye on them from a distance as they become young men and be subtly aware of behaviour changes that may signal early onset. I will only tell them if I suspect, test and know for sure. Because once you know it is the end of the world as you know it!
 

Claire Mary

Registered User
Nov 21, 2016
5
0
Citizen of the planet.
Dont tell him!

Personally, but depending on his temperament, I would tell him and encourage him to be tested.
You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.


Yes it is a 50:50 chance he will develop it. He doesn't have children but is in a fairly new serious relationship. I feel I must tell him now but worry I have left it quite late, it was to protect him. I wondered if anyone else has been through this and could give me advice on how to break the news to him.


I think your son has the right to pursue happiness. There is a reason Alzheimers Uk has placed a moratorium on insurance companies using genetic testing - because it prejudices you! Tell him on a NEED TO KNOW basis and right now he does't need to know. The symptomatic signs at the time will be the indicator to tell.
 

BR_ANA

Registered User
Jun 27, 2012
1,080
0
Brazil
Tell him before he had babies.

If he had, genetic doctors can help to select spermatozoa that won't give it to babies.
 

Vara

Registered User
Dec 31, 2015
6
0
I think your son has the right to pursue happiness. There is a reason Alzheimers Uk has placed a moratorium on insurance companies using genetic testing - because it prejudices you! Tell him on a NEED TO KNOW basis and right now he does't need to know. The symptomatic signs at the time will be the indicator to tell.


But if he gets married soon and wants children surely I would be guilty of not giving him and his girlfriend the facts. Actually the burden of keeping this from him is very heavy on me.
 

BungleGirl

Registered User
Sep 23, 2009
74
0
Lowestoft, Suffolk
I have the familial AD gene in my family too and didn't find out until my mum became ill. Her father who had it walked out when she was little so they didn't know that he developed AD at a young age as well as many of his siblings. As a person 'at risk' I would want to know of that risk. If you contact the Rare Dementia Support they will be able to talk to you about it. From various speakers that have been at the Familial AD support group it seems that being open and honest and giving age appropriate information is the best way forward.

I have chosen not to be tested and your son may choose not to find out if he has the gene mutation and that's okay, it has to be his choice and he can change his mind at any time. There is a little Facebook group for people that are affected by Familial Alzheimer's Disease (worldwide) that you or he might like to join too. Lots on the group, including myself, are taking part in research and drugs trials which has really helped me to focus on something positive.

My daughter is 16 and she has known for about 5 years about my risk of getting it. She also knows that if I get it, she could too. We talk openly and honestly and she knows that she can ask me anything and I will give her an honest answer. I would much rather she came to me for information than to start googling and frighten herself and keep it all to herself. More people at risk choose not to get tested than get tested at the moment. I'm sure that would change if there were a disease modifying drug.

My daughter sees me happily going off to London each month to take part in the drug trial, she sees me crying when I've had a post lumbar puncture headache, she sees me doing media stuff about Alzheimer's (always with her approval) and she sees me sobbing when I'm sad that other members of my family are becoming symptomatic. I want her to see all of this to show her that it's okay to be happy/sad/angry at various times. She mostly sees me getting on with normal life which is mostly what she is doing too. I'm pleased that I have managed to make something very sad and upsetting normal and okay to talk about and have feelings about.

I wish you luck with whichever decision you make and feel free to message me if you want to chat.

X
 

Theodor

Registered User
Jan 21, 2017
1
0
But if he gets married soon and wants children surely I would be guilty of not giving him and his girlfriend the facts. Actually the burden of keeping this from him is very heavy on me.

If I were in his shoes I'd appreciate it if I was told about it sooner rather than later. It may be bad news, but keeping it from him until it's too late would only make it worse. Not sure how you should break the news to him or what explanation you can give as for waiting so long, but I believe he has the right to know and should be made aware of it.
 
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Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi Vara
interesting info here
I guess it's down to your knowledge of your own family
 
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