Familial ALS (FALS) in my Family

[Mpiresteve]

Yesterday my Aunt was diagnosed with ALS. They started noticing it about 6 months ago. Having already had my Grandfather, my Father, my Uncle and another Aunt pass away because of ALS; we knew my Aunt had. My dad had 9 siblings, 3 are dead to ALS, 1 currently has ALS. Is 5 people a normal number for a large family with FALS? I'm scared for my 2 beautiful kids, my wife, and my 3 brothers.

[LifesWorthLiving]

Im not sure, but i believe numbers in this quantity even for fals is pretty rare....

[Mpiresteve]

Yes, that's what I'm finding out too.

[eyeoftheestorm]

So sorry to hear about your family . I have a very similar situation going on in my family . My grand father lost his father and sister , I have lost my grand father , mother , uncle , and just recently my little brother . This is a awful , awful disease ! The doctor has said that us three remaining kids have over 50% chance of having it , and worst of all we have been told it will not skip any generation !
All I can say is that you have to remain strong , and have hope ! God bless you , Sandy

[Mpiresteve]

Thanks Sandy, we are all remaining strong and have hope. You do the same as well.

[ltbeauti]

We don't really know about my dad's family history, but My father (passed after 17 years with symptoms) My sister has had it for 9 years, I have had it for 7 years. It seems to be a Slow progressing form, but still devastating.

[Mpiresteve]

Originally Posted by ltbeauti

We don't really know about my dad's family history, but My father (passed after 17 years with symptoms) My sister has had it for 9 years, I have had it for 7 years. It seems to be a Slow progressing form, but still devastating.

My grandfather had it for 7 years. My dad was next, he had less than 2 years. My uncle and my aunt, both had it less than 2 years. It seems it's progressing very fast with my other aunt.

As soon as we get my aunts genetic results back, my brothers and I are going to University of Miami and going to get the tests done as well.

[smfarr]

In my experience with fALS in my husband's family (for over 12 generations) and in other families I have researched...the overall penetration and expanse of the disease is fairly uniform. Other than ALS2 (genetically recessive) - the other mutations I have heard of are genetically dominant leaving each family member descending from an ALS Positive person with a 50/50 shot of inheritance. I have seen generations where the mutation is "silent" only to rear its head in subsequent generations.

Have you mapped out your family tree to see what the penetration is through the generations? Do you know what kind of mutation your family carries?

Michelle Farr
(Farr Family is SOD1 A4V)

[Mpiresteve]

Originally Posted by smfarr

In my experience with fALS in my husband's family (for over 12 generations) and in other families I have researched...the overall penetration and expanse of the disease is fairly uniform. Other than ALS2 (genetically recessive) - the other mutations I have heard of are genetically dominant leaving each family member descending from an ALS Positive person with a 50/50 shot of inheritance. I have seen generations where the mutation is "silent" only to rear its head in subsequent generations.

Have you mapped out your family tree to see what the penetration is through the generations? Do you know what kind of mutation your family carries?

Michelle Farr
(Farr Family is SOD1 A4V)

We are waiting on my Aunts blood results. Once we have her results, I'll be heading to Miami to have my genetic testing done. I spoke with someone at the University of Miami, in which I made an appointment to start (pre-FALS) clinical trials.

[kmendsley]

Wow that is quite a lot of people, I think it would be rare though I don't know for sure. My family has breast cancer running rampant through it and that is rare in itself as it has hit every woman in our family over the age of 24.

I hope for your sake, that it leaves your family alone from now on. Good luck to you.

[BeckyW]

My mother's sister had AlS and passed several years ago. My doctors think mine is sporadic.I sure hope they are right.

[HelenL]

I guess it brings it back to the question of genetics vs environment, and what is triggering it to begin with. I'm so sorry to hear of all the members of your family that have it.

I believe there were some studies done in Finland and Ireland that show a high incident rate, and also there's a cluster of als around a particular lake in New Hampshire. They're thinking that the NH one may be some kind of bacteria around this lake triggering it. If your heritage is Finnish or Irish, you should definitely try to hunt down that study. Not sure who it was that told me about it, but they had said it was Sweden, so I immediately looked into it as I'm 1/2 swedish.

Ironically, though no one in my family has als, my Dad had some neurological issues and was in a scooter/wheelchair for the most part the last decade of his life due to weakness in his legs and perpheral neuropathy; and Mom has benign tremors which keeps getting mistaken for Parkinsons. I think that some of these neuro issues seem to be worse in later generations, but not sure.

[Mary-Lynn]

Dear Mpiresteve
I am so sorry to read about your Aunt. I cannot even imagine the heartache and fear this disease has brought into your life. The losses are unfathomable.
Good luck with your genetic testing. I wish you and your family health and peace.
Mary-Lynn

[apoohone]

Dr. Elijah Stommel at Darthmouth Hitchcock medical Center has done extensive studies on genetics vs . environment .This hospital is in Hanover N. H . His phone number is 603-650-8664 . He is involved with many studies on ALS .Seek his help or input .