FTD/ALS - c9orf72

[quintok555]

My mother has ALS and has developed FTD. I read online that someone with FTD/ALS usually has the c9orf72 gene? And that gene is due to famillia? Please confirm because it is driving me nuts that I might get ALS in the future. No one else in my family has ALS and this past year I did not worry about famillia because of my family history but then I read about c9orf72 gene and now I have concerns.

 

[Nikki J]

FTD/ALS definitely happens in non familial forms. It is true that if one has c9 there is a higher incidence of the combination but sporadic FTD/ ALS absolutely happens

If you have no other relatives with ALS or FTD it is more than likely your mom’s disease is sporadic. You could ask for gene testing for your mom if you wanted. There are gene blocking treatments for c9 in development so even if she had c9 you should not worry for yourself.

 

[lgelb]

Very sorry to hear about your mom, quintok. Let us know in the CALS section if you have any questions or concerns related to her care.

Best,
Laurie