Maybe not...

[Clearwater AL]

Maybe not so rare after all... in just over a month there have been 19 new log ins to the Newly Diagnosed sub-Forum. Hmmm....

 

[skipper66]

I never knew of anyone who had ALS before dad was diagnosed three years ago. Now it seems like it's everywhere.

 

[affected]

When you consider there are around 1900 PALS in Australia alone, and we only have a tiny handful of members here, we could be inundated with new members and it would still be a rare disease ...

I forget what the current figures are for the US, let alone Canada and the UK.

When you consider how many active members we have, we only have a tiny percentage of the total PALS in the world here, so another 19 joining is still a tiny drop in the ocean of ALS.

 

[Clearwater AL]

Considering that ALS is considered a disease of the older (1000s aren't computer savvy), the number who don't jump on this Forum as soon as they are diagnosed (which I believe is far far more than those who do), and being that what I wrote was for just over a month, (*even deduct the few who may not really have ALS), this is not the only ALS/MND Forum and the number who may not wish to make their story public... I'd say it's catching up to some other diseases once considered rare. This Forum has it's share... and many we never hear from again after they post they have been diagnosed with ALS/MND. That number would be interesting.

 

[affected]

Interesting comment Al because in Australia it is NOT considered a disease of the older person. That causes huge problems for the PALS here who are over 65 as they come under a different health funding and have so few services available because of their age, but that funding is for diseases of the aged.

MND Australia are fighting this with the government just now and I have start some lobbying stuff to assist the fight.

However, all that aside I know our figures here haven't been updated for the public since 2013, and I would like to know if the incidence is rising, as it seems to be that way but I don't know.

 

[affected]

I should clarify that in Australia 'aged related diseases' are diseases considered more likely to occur after the age of 65.

So if someone 'aged disease' they have access to certain services including nursing homes.

 

[Nikki J]

I have been saddened by the number of new members but I have read in the US someone is diagnosed with ALS every 90 minutes. And the average age of onset is 55. While people in their 50s and 60s did not grow up with the internet most would have used computers in their workplace at the very least and everyone I know in that age group seems to be on FB etc. Supposedly the incidence of ALS approaches that of MS and I think most everyone knows someone with MS. The difference of course is that MS has some treatments and some forms that are less aggressive so they are more likely to stay around for a lot longer. I hope our influx is just that people have found us more easily or seeing others posting are encouraged to do the same. We used to have more active PALS members. Hoping it will happen again

 

[gooseberry]

I think age is not such a good indicator anymore....or at least we are trending that way. It looks like many newbies are in their 30s to early 40s but not fals. Some even their 20s.

 

[Nikki J]

Who is confirmed diagnosis in their 20s? Did not see anyone recently. And at least 3 historical supposed 20 somethings have been found to be trolls.

 

[Clearwater AL]

Maybe if the ALSA and the associated ALS communities could get the CDC (here in the U.S. anyway) to require all Neurologists to report ALS diagnoses... estimates could be become true numbers instead. A lot of people 55 and older may use computers in some form with their jobs... cursor clickers and one finger entries but many lack actual typing and composition skills to relate their story. (Plumbers, carpenters, painters, mechanics, truck drivers, roofers, and etc).

No one wants the numbers to rise. But... there are some indicators it may be happening.

 

[gooseberry]

At the VA the 50+ age threshold seems to hold from what we have seen so far. The general community seems a bit different to me. I am on a couple of other groups and several 40 somethings diagnosed. Many early 40s.

 

[MaxEidswick]

>And the average age of onset is 55

I have read/seen the top of the curve 62-65 fwiw

 

[affected]

What I've seen says most likely age of onset is 50 - 60 which I think then gets reported as 55.

I agree that many people in their 50's besides tradies have basic computer skills.

I hadn't noticed that many of our newly diagnosed are in their 30's and 40's. I need to pay more attention?

 

[DreamsEnd]

We've been told of a 20!year old recently DX'd in AZ and have a friend just DX'd in his late 80's. But I agree, I believe the Ice Bucket Challenge helped increase awareness and that the numbers are much greater than currently reported. Last I read said 36,000 in U.S. With 6,000 of them being vets. I'm guessing way more than that.

Sherry

 

[Barbie]

my husband was 46 when he was diagnosed--so about 44 when symptoms appeared