ALS and genetics

[happily single]

My children’s father just contacted me to inform me that he has been diagnosed with ALS. His doctor believes he’s had this disease for approx 18 months. He has been absent in his children’s lives for over 20 years. He is urging me to get the kids tested. We have a girl and boy aged 25 and 26. Our son has several Nerodivergent conditions as it is.

I am familiar with the symptoms of this terrible disease. In doing some Google research I can’t determine whether there is a genetic component.

In a terrible twist of fate a non blood family member was diagnosed with ALS today. What are the chances. This diagnosis is devastating to the whole family.

Does anyone have any thoughts/advice?

 

[loves to dive]

I'd tell the kids and let them decide. They are adults, it's really their choice.

 

[E&Cmom]

I lost my mom to ALS when I was 26 ( she was 63). From what I have understood 90% of cases are sporadic so 10% genetic. I am in my mid 50s now and have never thought of testing or was even approached. There have not been any other cases in my family that I am aware of. . It definitely is a person al choice. For me I am not sure if I have wanted to at that age and even now as unfortunately there is nothing to do to prevent it if the result was positive.

 

[sasywtch]

As a previous poster said, I'd tell your kids and let them make that decision. I just saw an article that they are now typing Epstein Barr to MS. Hoping if they find tie ins, they can come up with something to eliminate or slow down any disease.

 

[Marrila]

As mentioned above, I've always heard ALS cases with a genetic component are rare.
Here is a link to the ALS Association for additional information.

https://www.als.org/understanding-als/what-is-als

 

[PollyannaMom]

I always thought ALS was more a random tragedy than a genetic thing. I know it's hard not to worry, but I'd defer to the kids' doctors on whether they should be tested.

 

[tony67]

Is there a reason not to be tested?

Is it a simple blood test then I can't imagine why you would not be tested.
I guess there is the argument that you cant do much about it and they may not want it hanging over their heads for the next 20 years.
That said, since there are treatments that cant reverse it, but maybe delay it I'd want to be tested.

 

[dvcgirl67]

If it's true as others have stated....that only 10% of ALS cases are genetically passed down, I'd probably want to know....so that I could essentially predictably rule it out and go on with my life. It's a huge burden for you to carry as their mother as well.

 

[ronandannette]

If it's true as others have stated....that only 10% of ALS cases are genetically passed down, I'd probably want to know....so that I could essentially predictably rule it out and go on with my life. It's a huge burden for you to carry as their mother as well.

Tough one. We've only had one person on both sides of our (big) families diagnosed with ALS and his case certainly does seem random. Unlike Parkinsons or Huntingtons. DH's father had Parkinsons, as did several in earlier generations. He and his siblings have not undergone any genetic testing but it will be the first thing they investigate if symptoms appear, given the family history. I think it does factor into the decision that none of these things are preventable, so knowing in advance is a very personal decision.

 

[wide awake]

They’re adults and they have a right to know. Your ex may tell them anyway…do you really want to answer the question why you didn’t tell them if and when that happens?

 

[happily single]

They’re adults and they have a right to know. Your ex may tell them anyway…do you really want to answer the question why you didn’t tell them if and when that happens?

He hasn’t seen or spoken to the kids in 20 years. I was tasked,with telling them. my daughter knows. I haven’t told my son, but he has developmental delays so I am not sure how much of it he can process. I will speak with his doc at our next visit. .

 

[happily single]

I understand there is no cure. My ex wants the kids tested, in case they do have the gene they can begin medicine earlier than he did

 

[SirDuff]

Was he tested? Do they know which genetic mutation he has? That is the first step before thinking about testing. Though, not, that there are also spontaneous mutations in these genes (i.e. some people with non-hereditary ALS also show mutations in some of these genes). Also, not everyone with a mutation in these genes will get ALS (the relative risk depends on the specific gene/mutation).

 

[Marrila]

I understand there is no cure. My ex wants the kids tested, in case they do have the gene they can begin medicine earlier than he did

Is there ALS information and support in your community or nearby? Contacting them might be a good first step in getting more information as you consider testing.

 

[HopperFan]

Was he tested? Do they know which genetic mutation he has? That is the first step before thinking about testing. Though, not, that there are also spontaneous mutations in these genes (i.e. some people with non-hereditary ALS also show mutations in some of these genes). Also, not everyone with a mutation in these genes will get ALS (the relative risk depends on the specific gene/mutation).

THIS^

We have a condition in our family that a small percentage are genetically passed on with similar carrier/hereditary rates. Most are spontaneous and not at all hereditary. Testing was done first to determine which type they had, and that would determine if anyone else would need further testing.

 

[Cannot_Wait_4Disney]

How bout we ask Krantz on this one.
Flight they're still shallowing a bit up there. Do you want to tell em?
Can we do anything about it?
No.
Then they don't need to know do they?
Copy that.