I had genetic testing for FTD

[louie_clarkie]

Hi
My dad had early on-set FTD (PICKS) and I recently had the test to see if I carried the MAPT gene and discover whether or not I'd inherit the disease.
Although it was 50/50 as to which gene I had inherited from my dad- the good one that he'd received from his dad (my granddad who is soon to be 90 years old) or the dominant mutant gene from his mum who died in her early 50s- I am the first member of my family in years to have not inherited the disease; better than winning the lottery! However, it was a long drawn-out and emotionally challenging period of my life (and my husband's). I feared for what would my children's future would look like without me there, I pictured my house without me in it, but in a bid to save them going through the pain I had experienced for 24 years, I decided that knowing was better than not knowing.
Whilst going through the test I was desperate to find someone who'd been through the same thing and could only find 1 lady's story. So I'm posting mine on here in the hope of supporting anyone else in the same position.

 

[Selinacroft]

Hi Louie,

I'm not sure if this is helpful or not but I will post it anyway just in case. There is a free course running on Futurelearn that started last week. They are discussing 4 of the rarer types of dementia and the Familial type is the first one they look at in depth in week one so you may not need to plough through all thecourse. Although this is week 2 I imagine you would be able to enrola nd browse through week 1. Not really siure what the other 3 are but may be what you are looking for in there?

 

[Rich PCA Carer]

The course can be found here https://www.futurelearn.com/courses/faces-of-dementia#section-overview

You can still join up for free. It's a good introduction to some of the rarer forms of dementia, such as PCA, which is the reason I did it some time ago. It covers some aspects of the familial (inherited) forms of dementia.

You could also check out Rare Dementia Support, also supported by UCL, at http://www.raredementiasupport.org/

 

[Welshblack]

Hi
My dad had early on-set FTD (PICKS) and I recently had the test to see if I carried the MAPT gene and discover whether or not I'd inherit the disease.
Although it was 50/50 as to which gene I had inherited from my dad- the good one that he'd received from his dad (my granddad who is soon to be 90 years old) or the dominant mutant gene from his mum who died in her early 50s- I am the first member of my family in years to have not inherited the disease; better than winning the lottery! However, it was a long drawn-out and emotionally challenging period of my life (and my husband's). I feared for what would my children's future would look like without me there, I pictured my house without me in it, but in a bid to save them going through the pain I had experienced for 24 years, I decided that knowing was better than not knowing.
Whilst going through the test I was desperate to find someone who'd been through the same thing and could only find 1 lady's story. So I'm posting mine on here in the hope of supporting anyone else in the same position.

Hi Louie where are you based, it's the MAPT gene in my family so we're probably related.

 

[Shedrech]

hi @Welshblack
just to let you know that this member hasn't been back to TP since 2017 so may not see your post

if you click on the roundal above a member's username it gives some details and one bit is when they last visited TP

 

[Welshblack]

hi @Welshblack
just to let you know that this member hasn't been back to TP since 2017 so may not see your post

if you click on the roundal above a member's username it gives some details and one bit is when they last visited TP

Hi Shedrech, yes I had checked that before, thanks anyway