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Good morning! I am new to this site and I am seeking information on ALS so I thought this might be a good place to start. My husbands mother died of ALS at the age of 40. As it turns out her father also had the disease as well (my husbands grandfather). I think about this on a daily basis and I am wondering if anyone can give me any insight as to the chances that my husband may someday end up diagnosed with it. He has two older siblings, 40 and 37. I know diagnostics is not a cut and dry science but it weighs heavily on my mind all the time (not to his knowledge of course). Can anyone offer me any thoughts or knowledge they may have in they may have in this area? Thank u so much and god bless!

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A good question and one which there isn't exactly a clear answer today. There is genetic testing, but unless it has improved over the last 3 years, at best it only might be an indicator of familial ALS. Or not...My wife had her grandmother, her mom and then her succumb to the disease. All indicators would be this was hereditary, but the genetic testing came back negative..but then, with only a 5% accuracy, hard to say. And a positive result is not an "indicator" that you'll develop the disease. There was/is only 1 or 2 genetic tests available last I heard..and since results are so vague, save your money..oh, they run a fair chunk of change, in that 5 figure range...doubt insurance will cover as well....interesting that first his mother had it, but it was passed from his grandfather to her...normally it follows the line of "sex", such as in my wife's case...just a hunch, but I doubt it's hereditary. In my wife's family, it follows the female line, so my 3 daughters have all done their "freak out", but have resigned themselves to the thought that if they get it, they get it...nothing can be done to stop it...they barely have a clue as to how it starts let alone any cure, vaccine or whatever...its' all still very much in the air, even with good advances as of late...

The last thing you want to do is to allow this to "paralyze" your life....Just get on with stuff, love the moments you have and if it does develop one day, you have a magnificent support structure out here!! My best to you, but hey, get some Sleep!! Live!! Its truly needless worry and you can't live life in terror of what might or could happen....enjoy your life!! Mike

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Mike, I can't thank you enough for all of your words:) they truly made me feel better about our situation as a whole. I am aware that if it happens it happens and we will live each day the way we will. I love my husband very much and this is a part of life. I think I think about it more recently because we r reaching a point where we are discussing starting a family:) but we can't let this stop us and i certainly woul never think of depriving him fatherhood based on something he "might" get one day. Thank u again a million! I may check back for other questions and concerns. I'm sorry about your wife and her family as well and I wish you all the best!
-Meredith

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Meredith,

I have ALS and mine is not genetic. However, I have a friend that has ALS. There is 11 bothers and sisters in his family. He lost his mother and a brother to ALS. He has it now and was diagnosed in 2008. I am not sure what test are out there, but I can give you his e-mail if you like and you could e-mail him and he might be able to guide you. I agree with the other gentleman, you have to live your live to the fullest, try not to think about it. I would also recommend you talk to your husband and get his idea about what he thinks. Good luck to you and God Bless.

Kent

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Mine isn't ALS but another degenerative disease and it was confirmed by a fairly new nuclear scan - new in the United States, ten years running in the UK. I'm not dwelling on it, yet anyway. I'm not dwelling on any of the medical issues I have because I refuse to give up any of my living. It's mine and I'm very jealously holding on to it.

Your mention of starting a family is really why I'm posting. This morning at church there were three tiny babies in the sanctuary during the sevice. One was baptized. One was adopted about a month and a half ago. One was born the week before last. Until I read your post, which is heart wrenching by the way, I didn't think about their futures other than they all look rosy from here.

If one of them gets sick with a life-ending disease every one of us who knows them in addition to their parents will be overwhelmingly saddened. So sad in fact that words can't describe how painful it will be. But, we will celebrate them. We will thank God that they were here. Giving the option of never having had them here, to avoid the indescribable pain, we wouldn't give up the chance to have known them and loved them. I know this because I have lost a child. Its the way it is.

In the early 80s there were two men I knew at church. Both had ALS. I don't know if that was a fluke because they were not related other than being brothers in Christ. They have both died, of course. None of their kids, adult now, have ALS. They do have families and they live their lives. I don't know what they worry about but I'm pretty sure its not about getting ALS.

I believe that if you and your husband have a baby or babies in your future, and I truly hope you do, they will be born. I mean if God has them planned for you, they will get here, and they will come to you, the parents God chose for them. What a lovely expression of love for each other that will be apparent to your children.

I guess if I knew my illness would be passed on to a child - if I knew without doubt that is, I would consider not giving birth. And I'll tell you that I'm way past any possibility so its probably at least somewhat easy for me to say. Giving up having children is a huge price to pay for what if. You deserve to have the experience of becoming and being a mother.

Grace and peace to you.

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Perfectly said. Thank you for replying, so we could all read that.

Barbara

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Thank you for the heart warming words of wisdom and feeling. I find peace in knowing that there are others who share my faith in God and life in general. I made a promise to myself years ago to always remember that everything happens for a reason, even the things that seem as though will break us down. My husband and I have spend much time together discussing our future, and we both agree that life is going to grant us what it will and if that includes children, then it does. And in the words of my husband, if we don't have children then "we adapt and overcome". But thank you again, everyone, for your words and thoughts. I find this outlet to be helpful and heart warming:) I appreciate all of your help and wish the best for you all! Thank you and god bless.
~M

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Onigirl,

Although ALS typically appears ‘sporadically’ in most people, about 10% of the people diagnosed also have a close family member diagnosed with ALS. These diagnoses are referred to as familial ALS or fALS. The most common inheritance pattern for fALS is autosomal dominant. Autosomal means that it is equally likely that a female or male would inherit the gene mutation for fALS. Dominant refers to the fact that a person only needs one gene to have a mutation coding for fALS to have an increased risk for ALS. So someone who has fALS would have one gene with a mutation and one gene without a mutation. Someone whose parent who has fALS has a 50% chance to inherit the fALS gene mutation. The 50% chance comes from the fact that parents randomly pass on only one member of their gene pair, so that either the gene with the mutation will be passed on or the gene without the mutation will be passed on. Even though parents often feel responsible for their children's health, they have no control over which gene they pass on, just as their parent had no control which gene they passed onto their child. It is also important to remember that inheriting the gene for fALS in no way guarantees that a person will develop symptoms of ALS. If a child does not inherit the gene mutation for ALS, they cannot pass it onto their children http://www.alsa.org/about-als/genetic-testing-for-als.html.

Recent research has uncovered additional genes associated with both familial and sporadic ALS. Two independent studies, both funded by The ALS Association, have found a genetic abnormality that, according to researchers, is the most common cause of Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). These changes were found in almost 12 percent of familial FTD and more than 23 percent of familial ALS samples studied at Mayo Clinic. The defect is also the strongest genetic risk factor found to date for the more common, non-inherited, sporadic forms of these diseases. It was found in 3 percent of sporadic FTD and 4 percent of sporadic ALS samples in Mayo Clinic’s large clinical patient series http://www.alsa.org/news/archive/9p21-abnormality.html.

The ALS Association is hosting a special pre-conference session during The ALS Association Advocacy Day and Public Policy Conference in Washington D.C., which is devoted to addressing the issues that are unique to families impacted by familial ALS (fALS). The inaugural fALS Summit will include presentations by noted fALS researchers as well as genetic counselors. The Summit will be an interactive session featuring discussions on the latest developments in research, such as the discovery of chromosome 9. It also will provide attendees an opportunity to meet and network with other families from across the country who share the unique bond of familial ALS. The pre-conference session begins at 9:00 am Sunday, May 13th, the first day of the conference http://www.alsa.org/assets/pdfs/advocacy/2012-advocacy-day-brochure.pdf.

The ALS Association Upstate NY Chapter can provide you with additional information regarding ALS, local clinical research and efforts to increase awareness of ALS and find a cause and cure. You may visit the Chapter's website at www.alsaupstateny.org or reach the Chapter directly at 315-413-0121.

The ALS Association Care Services

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SBMD,

In Facebook familial ALS group a member recently posted --

"Does anyone have a list of all the known mutations that cause Familial ALS? I have a short list - but at the ALSA Fals session last year, there was a more comprehensive list."

Might you have a way to get that list from last year's Fals session? Thanks.

r

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rknt50b,

Can you share the Facebook link? I see three groups in my search query.

I have asked our Care Services Department if they have this comprehensive list.

Thank you.

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Just be cautious with this whole genetic thing...truthfully, if there is no vaccine, no cure available, what is one going to do with the information? Does it make any real difference "what" or how you got the ALS? Or the kind, assuming there's different strains? Does it really matter that you have some marker on this or that gene? If one day they can do a blood test and it comes back positive for ALS, what do you do? And who do you think then is allowed to see all these test results? Please, HIPPA is a joke, if we only knew 1/2 of that story. I mean, if uncle sugar comes in tomorrow and announces, we want all names of those tested positive for this, they'll go over backwards to get it to them..especially if you dangle the right carrot, like more research monies in front of folks...and if you don't tell 'em, you get fined...might already be in place, who knows? Why do you think healthcare has changed so much recently? I can tell from personal experience now, Medicare/Medicaid/Hospice...more & more, it's "comfort" level meds...

Its a very dicey path when you start down this avenue of genetics...if they get it down to where they can accurately predict a person's pre-disposition for such diseases, and they can in some, the next step is mandatory testing then for an unborn child as well...so, one day, you'll be mandated to have the unborn tested, and some stuff the kid is already screened!!! ...and what then? Like those who are tested in the womb and have Downs or whatever? I think we all know the answers here...Let's not kid ourselves..as we get so much more technology and proficient with all of this 'testing', or genetics, and we are able to do so much more with predicting health than curing what ails us, what do you think will happen one day with all this great knowledge?

I think its good we can have some predictors, but the issue is what to do with that information once you know...We only have to look at, I believe its Sweden or one of them that has euthanasia on demand or assisted suicide now....they actually have folks who carry cards to PREVENT this from happening, because they don't need your permission to terminate....this ain't conspiracy talk either any longer...its very real, very today....

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First, I am so deeply sorry for your loss. But, I have to say a huge thank you for sharing and for those most heartfelt words. I was very touched by your message. My husband has ALS. We are both 62. We have learned to live life to the fullest and enjoy every single moment that we have together.
Thank you again for your message. I truly believe many others have benefitted from it as well.
God Bless
Terrie

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My father and my brother died from ALS, and now I have it. We assume it's genetic, but I had the genetic tests done, and I do not have any of the currently known markers. So genetic testing has it's limits.

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