ALS Epidemic?

[Txgirl]

@affected, I know you think that you are an expert on ALS even though you do not have the disease. The researcher you quoted as saying sporadic ALS is caused by a gene that goes wrong. Something has to make that gene “go wrong”.

There are many theories as to what causes ALS. I used the word epidemic because ALS is not the rare disease that it is frequently referred to.

I do not tell you what words to use when you post and I have not violated any forum rules. I used the word epidemic and the last time I checked it was not a dirty word.
If you do not like my posts then please move on to another thread.

 

[ottawa girl]

Tillie,

It sure might feel like an " epidemic" in Texas. I know so so many PALS ( past & present) from Texas. It's scary.

Olly is correct, here in Ontario there seems to be a lot also ( 85 PALS at my clinic) stats reflect 3000 patients in Canada at any given time. That's a lot of people. Kinda feels like an epidemic here in Ottawa, lately too!

 

[joni51]

I personally think Als is on the rise.. More people diagnosed it seems everyone knows someone..

 

[johnnyliverpool1]

buy yourself a big fancy white car...and i guarantee for the next month you see nout but big fancy white cars everywere...........johnny

 

[Katie C]

I agree with you Johnny... awareness is a lot of it. And "rare" is a comparative adjective... for those of us who live with it, who spend time talking with others who live with, who attend support groups and clinics, we are surrounded by the disease and it doesn't feel rare at all. But then take the raw numbers... compare them with something like cancer or high blood pressure.... and you see that in the vast universe of serious health problems, the ALS numbers are really pretty small.

 

[Nikki J]

I certainly know a fair number of people with a friend or relative who have or have had ALS. Although the risk for SALS is low in any given year of life the lifetime risk is somewhere between 600 and 1000 depending on who you talk to which is not so incredibly rare. I think it is similar to the risk for MS. The difference of course is MS has treatments....

 

[affected]

wow Txgirl, I didn't mean any offence by posting my own observations, feelings and results of a seminar I just watched, sorry you seem to have taken some personal offence to my simply posting my own view.

Not sure either where you get saying I think I'm an expert from, I sure know I'm not. The more I learn about ALS the more I realise I don't know. But I like discussion as we all learn from it.

Johnny said it great, I love the way you put things across!

 

[Txgirl]

Tillie, You did not offend me. You were insulting. To clarify, again, I chose the word epidemic because here, in my world, there appears to be an increase of ALS. Had I opted to use the term pandemic, you might have pointed out nicely that this is incorrect.

I knew of ALS, long before my own diagnosis. My own experience is that this disease is increasing whether due to better diagnostics, or more of our US veterans afflicted.

I'm all for an open discussion, but it must be respectful. Adding smiley faces does not make a post polite. I hope we can move forward.