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Hboyajian,

Thanks for the suggestion of genetic testing. As I said in my earlier post, the test only identifies 20% of FALS cases, so a negative would by no means allay our fears -- and it would almost certainly make my husband uninsurable. That's why for now we aren't going to take it... It's quite unreliable.

I think for now our focus needs to be on preparing for and accepting that my husband may get this disease in the not-too-distant future, hoping to be spared, and enjoying our time together!

take care.
 
Dear Wishing, I do apologize. Somehow I didn't catch that statistic about the test for FALS. You are dealing with these difficult issues in a very thoughtful manner, and you are doing the best you can to give your family all your love now while you are together. I respect that. Holly
 
But this contradicts what I thought was true, that FALS affects males and females about equally.

The SOD1 gene is on the Y chromosome. Women have two of them and the other one takes over for the defective one. Men only have one, so they have no fallback position.

Pappy
 
wishingonwind said:
...I think for now our focus needs to be on preparing for and accepting that my husband may get this disease in the not-too-distant future, hoping to be spared, and enjoying our time together!

take care.
Dear Wishing,

Nothing presently is known to slow down the disease once started, with the possible exception of Rilutek. But a very large study of Vitamin E usage showed a dramatically lower incidence of ALS than among those who who took Vitamin E regularly compared to those who didn't. If I thought I might carry a FALS gene, I would certainly take Vitamin E daily in the hope that it would at least delay the onset, perhaps to a time when there is a real therapeutic.

John
 
Hi,

I just want to add my two cents worth. We waited 8 years before deciding it was OK to have a child. The world itself felt threantening. Besides we could think of no good reason to have a kid except we wanted one, OK two or three. We had two girls. I guess one of the deciding factors was we could not control life anyway. My best friend and sister was killed a month after her 22 birthday and 3 months before graduating from college. She was killed by a drunk driver. My 3 other sisters all got cancer. The oldest one died of it 12 years later. Two are still survivors. My mother and all of her sibs (4) died of one form of cancer or another and in two cases, my mom and her sister, each had two different kinds of cancer. My oldest cousin died of cancer like her mom. It runs in the family. I have been diagnosed with ALS but might have MMN. We do not have control over any of this. But I would not change one moment of love for and with my sisters. I would much rather have had them to lose than not to have them at all. All we can do is cherish who we have for as long as we have them. God Bless you in your joy and in your pain. Peace be with you. Peg
 
Saubier said:
Dear Wishing,

Only males get FALS, females are carriers. You could get the book, Choosing the Sex of Your Baby, to assure you have a girl. (It works if you follow directions).

If you both want children, have girls. They will have difficult choices one day, but maybe there will be a cure then.

Pappy


I wish that this was true, but it is not. Our family has been plagued by FALS. The chance is alot less in girls, but yes, it is quite possible.
 
Hello jcarnahan, I see this is your first post. I am glad you decided to join us. I am also sorry that FALS runs in your family. You must have quite a lot of stories to tell and experiences to share! Welcome! Cindy
 
Thank you cindy. I have been lurking for quite some time. My BIL is the 6th person that we know of on my hubbby's side to develop FALS. He has been rapidly progressing in a very short period of time, he is 33. It is possible that hubby's cousin is also now symptomatic, he is 26 and is going for further evaluation. We have two girls (we did not understand what ALS/FALS was before starting our own family) and therefore we also have alot of concern.
 
Just a comment on FALS. There are various types , but the majority
are not sex-linked, but Autosomal dominant conditions , which means that ALS can occur equally in both sexes. Without knowing 100% that your family has a sex-linked variety, knowing the sex of the unborn child isn't a guarantee of the next generation being spared from possible ALS. Some families have an x-linked form and others have autosomal recessive forms, so there is a mixed bag out there!
jean
 
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