Risks for FALS being passed on?

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I have some queries about hereditary ALS. In this forum I've read that if a parent has ALS, the child has a 50 % risk of developing the desease. I know for a fact that this isn't always true. Some info seems to indicate that the 50 % risk of getting sick only applies for people with SOD1, is that true? And that you otherwise have a 50 % risk of inheriting the affected gene, but that that doesn't mean you'll get sick.

My mother and one of her brothers have / have had ALS och their uncle (mother's brother) probably had it too (diagnosed as MS 40 years ago). My grandmother had 3 siblings. As mentioned, her brother seems to have had ALS and she herself seems to have been a carrier. My mother had 9 brothers and sisters, and is the youngest one of the bunch. Several of the others are well over 80 years old and healthy. My grandmother was 83 when she died.

Does this mean that we don't have the SOD1, but some other form of FALS? From the little information I have, it seems like 50% are carriers, and that 50% of the carriers get sick.

Other information or comments would be much appreciated!
 

Alyoop

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Hi Lena
You are correct. There are many types of FALS, but the SOD1 gene is the one that seems to have the most info available and carries a 50% chance of it passing down. I answered a post yeaterday with a paste from an article I found. It did not specifically mention the likelihood and % of the other types unfortunately, but there were many.

You can have a blood test for the SOD1 gene. There are often discissions on the forum abotr having it or not, seem to always stir up interesting debate. My family asled me to have it so I contacted the Neuro 2 months ago and thenkfully he never got back to me!

I am going to gothenburg next week for a conference. Interested to see that you come from there!

Maybe someone else here has the statistics you need.

Regards Aly
 
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Thank you for your answer!

The world is small sometimes! Gothenburg is great. =)
 

Alyoop

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Hey Lena, I arrived in Gothenburg yesterday. Been awake sly night! It seems lovely. The ECTRIMS conference starts today. I am looking forward to it, especially the new and emerging treatments for MS. There has been talk that some may be useful for mnd as well.
Lovely country. Would love to live here.
Hope you are well Aly
 

manwithaplan

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to clarify from an earlier post on familial mnd..... if a parent has a sod1 mutation the child has a 50% not mnd likelyhood of sod1 mutation - THEN if sod1 positive, has a 50% chance of having mnd sometime in their life. so the stats are:
chances of mnd 2:100,000 normal population
parent sod1 + = 50%
actually having mnd if sod1 + = 50%
therefore 0.00002 x 0.5 x 0.5 = 0.000005 for the normal population chance of mnd or 1 in 5 million
for a sod1 parent is 0.5x0.5 so 0.25 or 1 in 4 kids of that parent being sod1+
with a sod1 gene disorder and actually having mnd sometime in their life is 0.25x0.5 or 0.125 or 1 in 8 possibility
i know other stats will contradict me but that is science
tony davis b.ec m.ec (sydney)
familial mnd from grandmother, father, 2 uncles, 4 cousins - all with under 12mths. i havent got time to bugger around, too much life!
 

manwithaplan

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i should add, my 3 daughters (next line) still have a 1 in 4 of getting the disease sometime (prefer 60's) in their life. they are currently 4, 6, 8. it will be their choice to test.
tony
 
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Hey Lena, I arrived in Gothenburg yesterday. Been awake sly night! It seems lovely. The ECTRIMS conference starts today. I am looking forward to it, especially the new and emerging treatments for MS. There has been talk that some may be useful for mnd as well.
Lovely country. Would love to live here.
Hope you are well Aly
I'm happy you liked it! It's not as green as in summer, nor covered in fluffy snow (rather grey and wet at the moment), but still nice.

Always happy to hear that there might be some light in the tunnel, some cure / help / delay for ALS, so thank you for those encouraging words. Keeping my fingers crossed.
 
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to clarify from an earlier post on familial mnd..... if a parent has a sod1 mutation the child has a 50% not mnd likelyhood of sod1 mutation - THEN if sod1 positive, has a 50% chance of having mnd sometime in their life. so the stats are:
chances of mnd 2:100,000 normal population
parent sod1 + = 50%
actually having mnd if sod1 + = 50%
therefore 0.00002 x 0.5 x 0.5 = 0.000005 for the normal population chance of mnd or 1 in 5 million
for a sod1 parent is 0.5x0.5 so 0.25 or 1 in 4 kids of that parent being sod1+
with a sod1 gene disorder and actually having mnd sometime in their life is 0.25x0.5 or 0.125 or 1 in 8 possibility
i know other stats will contradict me but that is science
tony davis b.ec m.ec (sydney)
familial mnd from grandmother, father, 2 uncles, 4 cousins - all with under 12mths. i havent got time to bugger around, too much life!

I don't really get your explanation and the numbers, could you please explain a bit further? If my mother has the SOD1 gene (she is diagnosed with FALS), what are the odds for me and my children?
 

manwithaplan

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hi, sorry for the purely stats perspective. if your mum is sod1+ you have a 1 in 2 chance of also being sod1+, and if you are sod1+ then you have a 1 in 2 chance of mnd occurring sometime in your life. you or your mum or kids can be sod1+ and never get mnd. your kids have a 1in 8 chance of mnd only if you are sod1+ and a zero chance if you are not.
these are only statistical possibilities though - and not a rule. my father and his 2 brothers all were sod1+ and had mnd, i am sod1+ and have mnd whereas my older brother does not have the sod1 mutation.
hope this helps more than my last post.
 
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hi, sorry for the purely stats perspective. if your mum is sod1+ you have a 1 in 2 chance of also being sod1+, and if you are sod1+ then you have a 1 in 2 chance of mnd occurring sometime in your life. you or your mum or kids can be sod1+ and never get mnd. your kids have a 1in 8 chance of mnd only if you are sod1+ and a zero chance if you are not.
these are only statistical possibilities though - and not a rule. my father and his 2 brothers all were sod1+ and had mnd, i am sod1+ and have mnd whereas my older brother does not have the sod1 mutation.
hope this helps more than my last post.

Thank you! Why is the risk 1 / 8 for my children? If I have the SOD1, shouldn't they run a 1 / 4 risk of having it as well?

I'm sorry for your family. =/ It's indeed a strange desease, my mother has 9 siblings and only one other has developed ALS as of yet (my mother is the youngest one and has passed 70).

Are there some "rules" for SOD1? Age when you get sick, some special development pattern etc.? The 3 people in our family we believe have had ALS were all between 60 and 70 when they got sick, but the ALS seems to have progressed differently.
 

manwithaplan

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hiya again, if you are sod1 but dont get mnd then your kids are 1/8 to have mnd and 1/4 to also be sod 1. you can be sod1 and never get mnd developing so whichever ratio applies for your kids depends on what happens to you.
as for rules i dont think there are any - each case is different. in my case the mnd originates from my fathers side where my grandmother is held to have had mnd in her 50's although they called it polio in 1940.
my father and his 2 brothers were 63, 57,61 when diagnosed and lived between 8 and 11 months.
my 4 cousins were 49, 43, 42, 46 when diagnosed and lived between 6 and 12 months. i am 45 and 3 months in.
the progression in every case is different. for all of my family their hands then legs went with breathing last. i have lost use of my left arm but hand still just working, right arm and hand 100%, still walking but not far and harder to get up stairs unaided, breathing loss 50% and on niv at night.
sorry, this info will either help or scare the beejesus out of you.
tony
 
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Thank you for the clarification! And no, you don't scare the beejesus out of me. I've kind of heard the other info you wrote before. I can't say that the future don't scare me, but I try to live for today and not think too much about it.
 
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