Wooly
Member
- Joined
- Aug 23, 2018
- Messages
- 19
- Reason
- Learn about ALS
- Diagnosis
- 12/2017
- Country
- UK
- State
- UK
- City
- Emerald
Hi,
My husband has the C9orf72 gene mutation and so my children are at risk. They don't want to know. My question is this,
Do I tell the family?
There are sibliings, cousins, niece's and nephews also at risk and totally unaware of this.
They know my husband has bvftd but not that it is genetic or that he is waiting to find out of he has als.
Is it better to know or not?
I am worried about opening a huge can of worms!
I figured out a familial link but nobody else has.
My husband has the C9orf72 gene mutation and so my children are at risk. They don't want to know. My question is this,
Do I tell the family?
There are sibliings, cousins, niece's and nephews also at risk and totally unaware of this.
They know my husband has bvftd but not that it is genetic or that he is waiting to find out of he has als.
Is it better to know or not?
I am worried about opening a huge can of worms!
I figured out a familial link but nobody else has.