Wednesday, September 23, 2009

The gimp-numbers: 939,000 and counting

Relatively new information (Ap 2009) of a study done by NM Center for Development and Disability and announced by the Reeve Foundation-- the number of people with MS-related paralysis is 939,000.


There are supposedly only 400,000 people with MS in the US, according to MSAA and NMSS. The Montel Williams MS Foundation rings in with 1 million.

Not to pick nits, but 900000 plus is significantly more than 400000. It's significant. And it kind of explains why so many people know someone with MS, or have a family member with MS.

939,000- and that's just with MS-related paralysis.

What about the people without paralysis but with MS, like me? And no-- no one officially tracks MS statistics, which is one reason MS still seems like some kind of "orphan" disease, rare and generally downhill all the way for people with MS.

Well, WE know that's BS. WE know that the incidence is higher than anyone wants to admit. WE know it's the most commonly diagnosed neuro disease in young adults, people with a lot of life to live. WE also know it sucks.

2 bills are in Congress now, Senate bill 1273 and House bill 1362, both called the "National MS and Parkinson's Disease Registries Act". I wrote both my sucky senators (I say sucky because they didn't bother to get back to me even with the autoreply) to ask them to support the bill, and may well follow up with them. That there's not already a registry is frankly horrifying-- I know NARCOMS has the MS survey for people, and they have quite a few registered, but it's not necessarily nationally comprehensive.

Perhaps the bigger number will shock people into more activity, and more urgent activity.

Then again, orange-colored pigs may fly... sigh!

OH- and today is the sixth anniversary of the day my Bear and I met! Good times... I love you baby!

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