Status
Not open for further replies.

Jennrose

New member
Joined
Aug 19, 2015
Messages
1
Reason
Lost a loved one
Country
US
State
Oregon
City
Portland
So both my biological paternal grandmother and paternal grandfather died of ALS approximately a little over a year apart. I'm 33 years old and am wondering how concerned I should be and weather I should consider genetic testing.
 
Some considerations:

Do you know which gene to look for?

If I understand the testing, it can only find the markers it's looking for, and may not be as conclusive as we would wish.

Even if you got a negative result, would you really feel safe, trusting your life to the result of a lab test?
If you got a positive result, would you consider that an absolute death sentence? Just because you have the gene, doesn't mean it will be expressed, depending upon the gene.

In short, I'm not sure the test would affect my behavior, I would still work, still take vacations, still marry and plan to leave a legacy. But, I admit, I would not have children if I were positive.

There are others here who understand FALS very well. Wait for them to comment in the morning.
 
You will get a better reply from Nikki, but I'm looking at your statement - paternal grandmother and grandfather is a blow I can't imagine and so statistically unlikely.

They were not blood related, which is why I said so statistically unlikely. This means that if they were both sporadic ALS you are still no more likely to develop ALS than I am.

Do you know if there is any other ALS in either side of the family?
One family member with sporadic ALS, or in your case two from different sides of the family do not make it familial.

As Mike asked, do you know if there was a gene identified?

I'm so sorry you had this happen twice in your family :(
 
Marital ALS is a known phenomenon and very rare. Not a lot is known about it but I agree with Tillie that you should not worry. I think the best guess is environmental cause and you were not living side by side their whole marriage. FALS is completely different issue and there is a sticky about it. You should read it from the point of view of a SALS issue
 
Status
Not open for further replies.
Back
Top