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adiantum

MND or Lou Gehrigs disease

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adiantum

The recent death of Stephen Hawking has saddened me but also amazed me that he lived so long with MND.

 

Its also known a ALS Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease.

Just how common is  this disease?

 

As Df'ers, how many people do you know of that's had it?

 

Discussing Stephen Hawking with a woman I mentioned that contracting it was one of my fears.

 

I dont know if I carry the gene but it was in my family and I know of 12 others that have had it.

This woman then said her sister died of it.

 

This seems to be a lot of people to have had such an  horrific disease,yet Ive only known  of 3 that had cancer, which I would've thought to be more common

 

 

 

 

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dowling gram

Lee--What seems to happen to your particular circle of family and friends does not indicate the prevalence of a disease world wide. Personally I only know 1 person who died from ALS but I know several who had or died from cancer. I don't know what the statistics are but I'd think just the shear fact that there are so many different kinds of cancer would count it as the more common

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adiantum

So DG, you knowing of one incidence, which makes me think it's not such a rare disease anymore.

 

Years ago when  a neighbour was dx with it,  she  was featured   in a magazine as being  rare.

 

Ive since read articles on it   &  in them its described as being uncommon.

 

Perhaps its the ease of the media that  it has  taken it from being rare to uncommon.

 

I hope it never becomes " common "

 

 

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samuraiguy

The CDC lists the incidences of ALS yearly at 4.3 per 100,000 making it rare. The CDC considers a genetic "cluster" of a particular disease if 3 or more primary and secondary relatives share it. I have a business associate who is in the early stages of ALS and is the only person I ever knew personally who has it.

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adiantum

Interesting samuraiguy & thank you.

Much empathy & best wishes for your associate.

 

There was  just one in my family although another has MS, so I'll  assume confidence that it's not my genes.

I do feel concerned that its environmental. 

Ive been looking for a discussion  that I saved  about it being a cluster within a region a few hours  south of me.

 

The 12 I referred to have been closely associated within a small population of 3,000.

I might address this with the neurology professor of  Sydney University ..after I sell my house

 

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dowling gram

When My friend had it, before he died the ALS association came to his home a few times to take down information on his life. They were trying to find a common denominator and therefore a cause among people with the disease. I don't know if they ever did but that was a long time ago and I haven't heard anything so I assume they didn't. Like many diseases it may be a combination of factors and not a single cause.

 

It was awful to watch my friend trying to cope. I do think it effects people differently. Stephen  Hawking could not have lasted as long as he did with the way it effected Frank. Frank's throat was the first place it struck. Within a year he lost the ability to speak and swallow and had to be fed through a tube in his stomach. Unlike Stephen Hawking his muscles were the last to go and he never did lose the ability to walk. Within 3 years he was gone and he was only 42 years old.

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