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View Full Version : Familial ALS question


amywiller
11-12-2007, 10:58 AM
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
11-12-2007, 12:56 PM
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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