My Results are in

yellowrose

New member
Feb 18, 2018
7
0
I have just received my results from my genetic test for the C9orf72 mutation.......... I carry the faulty gene.

I'm 33 and have a very supportive partner. Together we have 2 children who are 8 & 13.

The gene is inherited from my dad's side of the family. My dad is 58 and was diagnosed with FTD a year ago. My dad's cousin passed away last year of ALS aged 54 and my grandma, dad's mum passed away aged 59 from undiagnosed ALS & FTD.

If anyone is in a similar situation it would be great to talk.

Thanks for taking the time to read xx
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
You must be devastated.

I am not exactly in your position, but my OH has FTD and his neurologist wants to do genetic testing.
We have children and grandchildren and we were told that if the genetics turned out to be positive for a genetic mutation then he and our children would have access to genetic counseling. Is this available for you?
 

yellowrose

New member
Feb 18, 2018
7
0
You must be devastated.

I am not exactly in your position, but my OH has FTD and his neurologist wants to do genetic testing.
We have children and grandchildren and we were told that if the genetics turned out to be positive for a genetic mutation then he and our children would have access to genetic counseling. Is this available for you?

I feel a bit numb at the moment. I had counselling before I was tested (although it wasn't much counselling more just going into the pros and cons of finding out).

My head wasn't really in the right place after she told me, so she said she would call me next week x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I do hope this counselor is helpful. If she isnt would an ordinary counselor help? I know they wouldnt know the answers to any medical questions, but might be able to help straighten out your thinking and guide you into knowing how to handle the future.
 

yellowrose

New member
Feb 18, 2018
7
0
I'll hopefully know more when I speak to her. I hope to be able to find out if there are any support groups etc
 

Rich PCA Carer

Registered User
Aug 31, 2015
107
0
North Gloucestershire, UK
I am so sorry to see your news yellowrose.

Can I suggest that you contact Rare Dementia Support? They run support Groups for 5 of the Rare dementias including familial FTD. See http://www.raredementiasupport.org/fftd/

I see you have been in touch with UCL. Rare Dementia Support is associated with the Dementia Research Centre at UCL.

My wife has PCA and we have found that the support groups and contacts we have made with others with PCA have been our best support.
 

PJ

Registered User
Jan 26, 2017
358
0
57
Bristol
I have just received my results from my genetic test for the C9orf72 mutation.......... I carry the faulty gene.

I'm 33 and have a very supportive partner. Together we have 2 children who are 8 & 13.

The gene is inherited from my dad's side of the family. My dad is 58 and was diagnosed with FTD a year ago. My dad's cousin passed away last year of ALS aged 54 and my grandma, dad's mum passed away aged 59 from undiagnosed ALS & FTD.

If anyone is in a similar situation it would be great to talk.

Thanks for taking the time to read xx
Hi Yellowrose, I’m so very sorry to read your news. You will find lots of support & advice here I’m sure.
It’s good to know you have the love & support of your family around you. Take care
 

jannabananas

New member
Aug 13, 2018
2
0
Dear @yellowrose I am almost in the same boat as you. I actually joined this forum to send a message. My dad died of Pick's at 62, but he had signs since he was at least 50. I am 39, with one small child of 6 years old. I have been having some issues and I can't help but think "it's the beginning of the end", I am so petrified and though my husband is supportive it's difficult to find someone that can truly understand. If you would like to chat, I would love to.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,002
0
72
Dundee
Dear @yellowrose I am almost in the same boat as you. I actually joined this forum to send a message. My dad died of Pick's at 62, but he had signs since he was at least 50. I am 39, with one small child of 6 years old. I have been having some issues and I can't help but think "it's the beginning of the end", I am so petrified and though my husband is supportive it's difficult to find someone that can truly understand. If you would like to chat, I would love to.

Hi and welcome to the forum.

I just wanted to mentioned that @yellowrose hasnt been on the forum for a while. .I was worried that your post might get overlooked here. I wondered if you would like to start a thread of your own. There's part of the forum called Memory Concerns And Seeking A Diagnosis.

https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/

If you think it would be helpful to do that then just click on the link and you'll see the start new thread button at the top.