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MichelleDZ

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Loved one DX
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CA
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Los Angeles
In my family tree on my mother's side, you can trace ALS better than eye color. We are clearly in the 10% that is FALS. AND it affects the women. AND its incredibly rapid (diagnosis to death tends to be a year or less in my family... I think 2 years is the max).

I'm not so much concerned about testing for me (I either do, or I don't and I'll either die of it, or I won't - since there is nothing more I can do other than support the research, I'm not worrying that much about it). What I am concerned about is that my husband and I are planning on starting a family in the next couple years. Does anyone have experience with genetic counseling with regards to ALS? I currently live in LA so I'm wondering if I should look into it now while I'm in a big city that likely has more specialists? :confused:
 
Hi Michelle,

I am replying even though I have no direct answer for you. I hope my response bumps your thread a little so others see it.

When my partner was diagnosed and because he had been adopted (hence difficult to know if the form was sporadic or familial) we were offered genetic testing, and associated counselling because we were planning to start family. We declined both.

Regards, Dani
 
I'm curious as to why you declined the genetic counseling when you were planning on starting a family? (I am NOT trying to be judgmental, I just want to hear people's reasoning so I might consider a point of view I hadn't thought about yet.)
 
every doc we have talked to tells ua there is no genetic marker as of yet yet to trace ALS. We are dealing with the Mayo Clinic in Jacksonville as a part of the clinical drug studies for ALS.
perhaps I am mistaken but that is my undersatnding
 
There is genetic testing for familial als, which is what being discussed here.

I am not in your situation, but as a mother of 5 children, I would not hesitate to see if I am carrying the gene before I embarked on a family. It does open up a pandora box of problems should you be positive, but at least you have all the information and counseling you need to make a well informed decision.
 
Michelle, declining testing was not an easy decision but it was in line with the way we both live our lives - we take chances. Perhaps our decision would have been different had we known for sure there was a history of
ALS in my partner's family. Additionally, we felt that there will be a treatment or a cure for ALS in 40 or 50 years - the time we estimated it will take to affect the next generation. We have traced both of my partner's biological parents since and found there is no history of ALS in the family.

I Could Have
Read A Poem Called
Ozymandias
To Her Instead
I Lived For The Moment
 
thank you
there is so much about this monster we(my husband and I) have yet to understand.
 
My grandfather had ALS. He was never diagnosed but looking back now mine started just like his and I have been diagnosed. By too many doctors to count. I think in your situation I would have wanted to know. I have a 1st cousin. Heading up the same road but note diagnosed yet and. My cousn's little girl has cp .... I have 2 sons and 3 grandchildren At this point I am worried about them.
 
In thought genetic testing for familial ALS can show if one carries either of the two genes (SOD1 or FUS ?) but there can be much greater number of genes acting as triggers/causing familial forms. I personally know of 2 uk Pals who
tested negative and yet have a familial form with (several people in each generation affected). The genes responsible are simply uknown in their cases. D
 
for more info about the genetic testing for FALS: Genetic Testing for ALS - The ALS Association

Thanks Dani for your honest response.

With so many of the siblings/cousins in my mothers generation having it, the odds certainly aren't good. Of course, all this might be for naught. If the two cousins with it now get tested and their genes dont show the markers that sometimes indicate, then its unlikely that it would show up in any testing for the rest of us.

The point about finding a cure in the next 40-50 years is certainly a good point.

We just have such an aggressive and non-sexist version running through my family, that if women are the ones who pass it on - this could stop with ME, in my branch of the tree since I have 2 brothers. Is it silly of me to feel like I'm responsible for stopping this from passing on?
 
It is absolutely NOT. Silly at all.
 
Michelle,

I'm not aware of ANY forms of familial ALS that discriminate based on sex or are linked to the X-chromosome. You have the same probability as passing on or getting the gene as your brothers are.

-Tom
 
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