ALS Hereditary Statistics

[Lattice]

Hi All -

I'm looking for an answer to a question that causes a lot of anxiety in my family, and I'm sure many other families who've been touched by ALS.

The question is simply: if you have one family member who has had ALS, what is the likelihood of it being passed on? I have seen a statistic that 5-10% of diagnosed cases are familial, but that doesn't really answer the question.

Here's our situation: my father passed away from ALS a few years back in his late 60's, soon after being diagnosed. No other family member has been diagnosed but he has one sibling, his father passed away in his 50's (not ALS) and we don't know the earlier history.

I am the oldest (48 yo) of five siblings. Every time one of us has anything that remotely resembles ALS - muscle twitches, weakness in a limb, etc. we get extremely concerned that we have the disease, and the implications it will have for us and our children.

I'm sure this anxiety is shared by many families who've had a family member with ALS. It would ease many anxieties to know that the chance of passing it on is small, but is it really?

I have never seen this question answered on any website and I wonder why. As a statistician myself, I think some kind od answer should be readily available.

So what is the chance of someone getting ALS conditional on having only a parent with ALS? If there's a medical professional out there who can help answer the question, we would be grateful.

Best of luck and hope to all

 

[mommagoose]

Hi, I understand your concern. I am not a doctor. My father and oldest sister died of ALS. Now, I am having difficulties. I also read it could be a 50/50 to children. I am sorry for your loss of this destructive disease. My heart goes out to you and your family.

 

[hopingforcure]

One person in the family does not increase your chances of getting ALS at all. When a number of family members have it, then it may be familial, and if it is then it is 50 percent chance if one of your parents has it.

 

[rcharlton]

There are a number of different forms of familial ALS. The majority of them are autosomal dominant - which means that one of your parents and one of your grandparents and one of your great grandparents and one of your great great grandparents etc. - along with a slew of aunts, uncles and cousins - must have had ALS.

So in the absence of any evidence that some other family member had/has ALS, it is safe to assume that your father's case was sporadic. Meaning, as H4C previously stated, the likelihood of your developing ALS is the same as the general public which I believe is about 2/100000.

So relax.