What are the odds that I will inherit ALS from my father?

My father is 47 and has ALS. I was really sad when the doctor told me this. And I did some research online and found that ALS might be hereditary. Will I get/inherit this disease? Is the chance high? My father is the only person in my family history who has this disease. and I DON'T KNOW IF HE HAS FAMILIAL ALS OR NOT.

Thanks.

Report post

12 replies. Join the discussion

It's really good to ask your own doctor, as I am not a medical professional, but when my sister got it, I was worried about the same thing you are. But my doctor told me that if I was at risk for getting familial ALS, then there would be a long line of other relatives older than I who had died from it. Since there weren't any, other than my sister, I stopped worrying. I also asked her (my doc) if I should have genetic testing, but she said that that might work out badly for me if they found something else, something different, that prevented me from getting medical insurance in the future. So I didn't get genetic testing, and I also stopped worrying about getting ALS. I hope you will be able to find some peace with your dad's situation. My sister passed last summer and I'm still learning about myself, others, the world, and God from walking through that experience with her.
Sincerely,
Barb H.

Report post

Absolutely agree with RochesterBob on chatting with your doctor. He/she will ask you about your family history and how much you know about both sides of your family (mother/father). He/She will ask if you have any cousins or siblings with the disease - if so, how many and at what age was the onset of the disease.

Familial ALS is rampant within our family. In studying our family tree, we see that it usually hits every generation, without gender preference, but has been known to be "dormant" for at most two generations in some branches. If you can look at your tree and see that in the last 2-3 generations, there is no case of ALS in your father's family, then more than likely your father's case is an unfortunate case of sporadic ALS (meaning, not familial).

I hope this helps you and wish you well in your family research. Again, please chat with your doctor and your father's doctor if you have more specific questions on your situation. ALS is a frightening disease and I hope you get the answers to your questions.

Report post

I meant "RochesterBarb" ...sorry....

Report post

i agree also with rochesterbarb.you can clarify the variant of a.l.s. through the physician or neurologist caring for your father.95% of a.l.s.ers are of the sporadic variant while only 5%are familial and can be identified via the sod1 or sod2 genes.more markers are slowly being identified for a.l.s. although again this mostly applies to familial.hopefully your father wil not progress rapidly.the "starting"point or area of the body affected when symptoms present can in some cases give a clue to rapidity of progression.this is not a strict law of progression or its rapidity.let's all just pray that a cure will be discovered soon,and in the mean time... never ever give up hope,keep the faith,and keep smiling.we'll pray for you here in the Holy Land.
lots of encouraging hugs,prayers,and smiles to you all :) :) :) :) :) :)

Report post

Your father can be tested for the SOD1 gene mutation; if he does not test positive for the mutation than chances are it is not heriditary.

Report post

I LOST MY HUSBAND 7 YRS AGO TO A.L.S. HE WAS 42 WE HAVE 3 CHILDREN THEY ARE ALL GROWN HOWEVER THIS SAME QUESTION WREAKS MY MIND THAT WHY WE NEED TO ALL STAND AND FIGHT FOR OUR LOVED ONE'S.I HAVE A NEW BOOK ABOUT OUR EXPERIENCE DURING HIS LAST NINETEEN MONTH BATTLE. I AM DOING EVERYTHING IN MY POWER TO GET PEOPLE AWARE AND LET THEM KNOW THAT IT COULD BE THEM TOMORROW. PLEASE CONTACT TALK SHOWS ABOUT THIS DISEASE THAT'S THE BEST WAY OF HELPING PEOPLE BE AWARE OF LOU GEHRIG'S DISEASE.I HAVE A VOICE AND I'M NOT AFRAID TO USE IT IF I COULD HELP JUST ONE THEN I WILL. NO ONE REALLY KNOWS HOW THIS WORKS SO ALL I CAN SAY IS LET'S STAND TOGETHER AND FIGHT FOR ALL BATTLING A.L.S. THANK YOU KATHY HALE BOOK NAME Our Journey of Nineteen Month's in Hell with Lou Gehrig's Disease [The Charles Hale Story]

Report post

The familial ALS gene is unpredictable. I know people who have lost 34+ members of their family, whole generations, mothers and all offspring, to this disease. That is the work of the SOD1 gene. But there are other less aggressive genes at work in families, too. I have lost four members of my family to ALS. It difficult to see a pattern in those losses because it's only two generations and seems to have come out of nowhere. All I know, is that ALS is NOT A RARE disease. It's not incurable either...it's just underfunded.

Report post

Horribly underfunded and in past generations probably misdiagnosed quite a bit. Standing up is so very important because if we dont kick and scream we will never be noticed for being much bigger than originally recognized! I'm losing my father to als ftd and he has lost 3 people on his branch of the family tree, so now i feel like we (this generation) are just sitting ducks. Playing the waiting game is no fun and eats at you little bits for sure.

Getting involved is scary but i would do anything to prevent my children and cousins from having to deal with this 20 years from now.

KICK AND SCREAM I TELL YOU
lisa

Report post

As others have indicated, only 5 - 10% of all ALS patients have familial (hereditary) ALS. An ALS patient can be tested for the defective gene so that other family members will know if it's hereditary. Some have expressed interest in participating in studies. There are studies being done on those who are known or related to those known to have the mutation. My family is participating in one such study at Emory University in Atlanta, GA. There are others out there. Another place you can check with is ALS TDI in Cambridge, Massechusettes. We can trace ours back 4 generations and so far 9 known family members. It is devastating and we need to do all we can to help researchers find treatments/cures. Yes, kick and scream and get involved!

Report post

My husband's mother died from ALS in 2001. In 2008 he was diagnosed with ALS but did NOT have the familial gene. His brother wanted to immediately be tested to see if he or his kids had ALS. You know what my answer was to him? DON'T, unless you have specific symptoms. There is no cure for ALS so there is nothing you can prevent by knowing. My advice to you is YES .... get involved! But don't go looking for the disease in yourself. Enjoy your life and live every day to the fullest. That's how you can fight back against this dreadful disease. Get a walk team together. Join the advocacy groups going to Capital Hill. Talk to your local media and try to get an awareness show on their airways. Scream and shout it from the rooftops. But live your life and put fear for your future health on hold.

Report post

I am an ALS researcher and would like to help provide an update on the familial form of ALS for some of the questions here. Familial ALS is thought to make up about 10% of all ALS, with the other 90% being sporadic (meaning no family history). When 2 or more people in a family have had ALS, we think of it as likely being 'familial' (FALS). There have been several genes identified now that can cause this familial form, and they are found in about 30% of these families so far. The more common genes include SOD1, FUS/TLS, TDP43, FIG4, angiogenin, and can be tested for easily. But we still do not know the gene that might be causing the disease in about 70% of the familial ALS families.
We have been studying FALS for many years, both in searching for new genes and in understanding better the genes that we do find. I would be happy to speak further with anyone who may still have questions about themselves, their families or the research.

Report post

Hi , thanks for your energy, heart , and determination to work for something, anything to rid our lives of ALS.
My family (from my mom's side) has a rare SOD1 mutation. It is : exon 5 E133A. Much of my family has sent blood sample to Northwestern Univ in Chicago.
the women in my family tend to get it earlier, around 50 or so. Then get it later, 60-ish?
Our patern is the first one ortwo years, the disease seems to be failry mild. then BAM ! it hits and we're gone (dead) in about 3 to 4 months. My brother died 2 and 1/2 months after diagnosed. He was misdiagnosed for about 2 years. My mom was misdiagnosed for a year or more, then died at age 52.
My oldest brither Paul has it, and so do I. I am the second youngest of nine children. I' sure (intuitively) that one of my sisters either had ALS already (but not daignosed) or was goign to get it. She died in her sleep at age 40. We did not get a blood sample . Like the others in my family who already died or now have ALS, have the E133A mutation. I seem to be following my mom's and brother's progression. I am a young 50 year old--no children. I have a wife and a puppy, and we live in a wonderful, suportive community in Northern Calif. WE live in Davis, home of UCDavis.
I am experiencing some of the "cognitive" challenges people rarely talk about. This is difficult , because I've always had an excellent memory, recall, etc.
I attended the ALS Adovocy Days in Wash DC in May.
I have a "blong" blog + song+ blong, at : www.cathydyingasliving.com And our music website www.duvalspeck.com
I will be getting a hospital bed next week to help me breathe at night. Also , I'll be cheked for carbondioxifde saturation ( anABG test.)
My questio is, how do we communicate better wiht neurologists who act like they "know everything," yet have notr expereinced being in the body of a PAL, nor been the caregiver of PALS, like I have.
My primary Doc is super because she listens, and does NOT claim to be an ALS expert. The arrogance of some of the Neuros is appalling. And why do they NOT tell their patients about ALSA?
I knew about it because of of my family history, so in that way , I feel lucky....
Also, does anyone else (women) have difficulty urinating? I have much difficulty getting my muscles working to "push" the urine out.
Thanks for your help!
Speckles

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support The ALS Association

Help The ALS Association reach its goals and support people like yourself by making a donation today.

Donate to  The ALS Association

Discussion topics

Community leaders