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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.
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.
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.
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 :) :) :) :) :) :)
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.
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]
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.
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
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