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amywiller

New member
Joined
Nov 12, 2007
Messages
5
Reason
Loved one DX
Country
US
State
MI
City
St. Joseph
Hi everyone,
I stumbled across this website while searching for information and am I glad i found it!
I am the daughter of a pAL and my question is, my dad has been diagnosed and three of his sisters (my aunts) have already passed from the disease; yet one or two of them were tested for "the gene" and it didn't show. So how do we know if it's familial ALS or just a horrible statistical anomaly? My sibling and I are concerned about his and my risk but don't know who to ask.
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
From the reading I've done the SOD1 gene mutation only shows in about 20% of the familial ALS cases. Couple that with the fact that familial ALS is believed to account for less than 10% of all ALS cases and the odds heavily favor your horrific anomaly.

The first question my wife and I asked when I was diagnosed was about our kids. My neurologist said they realistically their chances are no different just because I developed it. I know it isn't much but it's the best I can do.
 
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