W5 A huge disappointment

[Guest guest]

Joyce,

Was this only shown in Canada?? I've NEVER seen ANY commercial on EDS -

EVER!! I think it's good to get SOMETHING, but I do know what you mean! It

must

have been very disappointing! How did it happen in the first place???

Love Lana

[Guest guest]

Joyce,

Was this only shown in Canada?? I've NEVER seen ANY commercial on EDS -

EVER!! I think it's good to get SOMETHING, but I do know what you mean! It

must

have been very disappointing! How did it happen in the first place???

Love Lana

[Guest guest]

I sent this last night and have no idea why it didn't post:

I saw the commercial a few days ago with a girl pulling the skin on her neck out

with the voice over saying something like " what do you do when you have a

disease so rare no one is looking for a cure " , which needless to say, got my

immediate attention. So, I figured that person had EDS and maybe, for once, the

media was going to give it some attention and a glimpse into the reality some of

us live with.

Well, they only mentioned three symptoms - rubbery skin/ skin that tears,

dislocating joints and organ problems (with graphics for the last two. But the

girl shown only really showed her pulling her skin. That's NOTHING compared to

what a number of us on the list, myself included suffer on a daily basis from

this. That was IT! I had called so many people to watch it and was soooooo

disappointed. They only gave a very brief time to EDS compared to the other

disorder they presented. I think there are enough of us on the listserv in

Canada who could have illustrated how debilitating it can be rather than very

briefly mentioning a few symptoms and showing next to nothing representative of

the condition. Heck, showing my collapsing hand or someone's massive bruising

would have made the point a lot better than a little stretching skin. Of course,

nothing about debilitating pain was mentioned either. IF they had only presented

someone visibly worse off with it, it could have done so much to raise awareness

of this condition. Usually I don't let myself get my hopes up about anything

because I have had them dashed too many times but silly me, I actually hoped for

some image other than mild EDS or the " circus performer " type symptoms. Like the

TLC program that showed a guy putting himself in a box. Yeah, that's going to

help someone who is suffering on a daily basis...

<sigh> I am just soooo severely disappointed. Why can't a program just once

give peole with EDS and the disorder the attention it deserves?

Joyce