Old 01-05-2018, 05:20 PM #1 (permalink)
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Default Familial ALS?

Hi all,

Thank you so much for taking time to read and respond. I️ really appreciate it and all this forum does. I have a question about familial als. My mother in law passed away from als at 57 after a 6 year battle with bulbar als. At the time it was determined that hers was sporadic. For obvious reasons, i follow ALS news and saw the connection between FTD and ALS. My MIL was the first and only case of als the family can trace and she has two siblings and cousins. Additionally both of her sets of grandparents lived into their 80s. (I donít know their cause of deaths). A few years ago, my MILís mom started showing memory loss/ early dementia around 81 or 82. Iíve been told it is NOT FTD. Does it seem sporadic or possibly familial to you based on your knowledge? My hubbys family does not want to do genetic testing and i respect that. We have kids so this makes me nervous of course.

Thank you!
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Old 01-05-2018, 05:26 PM #2 (permalink)
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Default Re: Familial ALS?

I'm sure there are no familial issues here. When ALS with or without FTD runs in a family you know because you see it happening all the time.

I hope you can move past a fear of this and just enjoy your husband and children
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Old 01-05-2018, 05:36 PM #3 (permalink)
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Default Re: Familial ALS?

It is likely a case of sporadic ALS and another of dementia in an elderly person. Dementia especially Alzheimer's is unfortunately very common.

I wish I could say 100 per cent zero chance of a familial link. 81 is at that very high end though for a familial presentation. The genetic mutation that is usually involved in FALS / FTD is c9 orf72. The onset age ranges between 35-82 with both ends being rare and late 50s - early 60s being most common. FTD is the dementia presentation usual though some c9 families seem to have either a different type of dementia or unrecognized FTD.

The good news here is in the unlikely event this is c9 treatments are close and prevention not far behind. I don't know how old everyone is but there is definite hope that even IF this is familial ( unlikely) it will be almost a non issue in 10-15 years- maybe sooner
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Old 01-05-2018, 05:51 PM #4 (permalink)
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Default Re: Familial ALS?

Thank you both! That is super exciting about potential treatments in the future. We fundraise/donate every year and it motivates me to see potential treatments on the horizon. My husband is 34 and his oldest sibling is 40. I’m reassured it is most likely sporadic. Would it also be uncommon for his grandmothers parents to live into their 80s without the disease? I know penentrance can rarely be incomplete but does happen. If 80 is late to present, would it be even more rare to present late for two generations then present at 50 for my MIL if that makes sense?
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Old 01-05-2018, 05:59 PM #5 (permalink)
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Default Re: Familial ALS?

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