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layton1

New member
Joined
Sep 18, 2008
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1
Reason
Loved one DX
Country
US
State
NY
City
NY
I lost my father to ALS three years ago. His sister passed from ALS the year before him. They believed that it could point to Familial ALS. I remeber vaguely in that time someone suggesting submitting to a genetic test for FALS. I seem to remember them saying that even if I wished to remain anonymous and not learn the results it could still potentially help others. At the time I was completely against it as I did not want to know years ahead of time of a disorder I might or might not have.

Does anyone know any details on this test? How accurate is it? Is it useful, i.e. if I tested positive are there measures to prevent the disease? Could my being tested help others with the disease?

I think at the time it was too much to deal with so I refused and put it out of my mind. Now that some time has passed I think I might want to do it. If at least for the benefit of others.

Any thoughts are appreciated? I pray for you, I know a little bit of how hard this disease can be. Stay strong.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi layton1. I am sorry about your father and sister. Welcome but sorry you had to come looking for information. If you scroll down this page to the bottom there are similar threads that may answer some of your questions.

AL.
 

Karin Bolette

Active member
Joined
Mar 14, 2010
Messages
44
Reason
PALS
Diagnosis
03/2010
Country
CA
State
Ontario
City
Toronto
As I understand genetic testing for ALS is determined by your genetic background- what part of the world you come from. There are different genes that are damage depending on where your genes originate. I am Danish for over 1000 years, from an island in the Baltic Sea. After contacting Scandinavia ALS, which is a research agency they told me of a recessive mutated gene D20A that only Scandinavians have. Because of the mutation of the gene which is suppose to block the absorption of zinc and copper from the protein in the development in the cells, the toxins are allowed through damaging the binders which hold the proteins together in the cells and over time if one is the carrier of this mutated gene then ALS MAY develop. It is not an absolute though. Whether both parents need to carry this gene I don't know. The mutation of this gene effects only people of Swedish, Norweign, Danish and Fin orgin.
As I understand in some islands in the South Pacific, there is a different gene that is mutated which can also lead to ALS. So the actual gene that needs to be tested has to be pinpointed. There are several other areas in the world where ALS is more common and if your looking at genetic testing it might help to know your orgins. Hope that helps. Karin Bolette
 
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