My daughter's father passed from ALS in 2010

Jmshinc

New member
Joined
Jul 26, 2019
Messages
1
Reason
Lost a loved one
Diagnosis
04/2008
Country
US
State
NJ
My concerns are for my 2 daughter's. Their father passed away in 2010 and grandfather 1989. Both were military, my concern is for my daughter's. My one daughter is particularly worried that she will contact the disease. Her concerns are the chances of getting it.
If she can get and if she's got the familiar Gene. I've also explain to my daughter that she also didn't follow the same steps as her father did in life , she was not in the military. I guess what I'm looking for is somebody who has advice on dealing with a daughter who is scared to death, of contacting the disease and what she can do to rid some of her anxiety. She had thoughts of testing, but than if she has the Gene she will worry more.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,584
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
While military service increases risk the fact that her father and grandfather had ALS does raise a question of FALS. If no one had ALS besides them or another neurodegenerative disease ( look at the great grand parents, and the siblings of the 2 men)

2 first degree relatives with ALS that are not true FALS would be about 1 in 100 cases. The scenario there is there was a genetic predisposition that got activated by a series of triggers with the military service being part of it

How old are your daughters? Are they adults? How old were the men?

There is not just one gene mutation to test for and only about 60-70 percent of clear FALS have testable mutations So genetic testing without a known mutation is not that reassuring. Genetic counseling might help.

There is a lot of work being done for FALS. A phase 3 for one mutation looks like it slows active disease. There is hope given earlier it might be preventive. A phase 1 for another mutation is in progress. Together those mutation cover 50 percent of FALS approximately so there is much hope for asymptomatic carriers.

How your daughters approach and deal with this is very individual. Some FALS families get involved in research studies and find it helpful.
 
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