"wiggles Disease"

[briarrose]

Ok, not sure about everyone else but this just struck me wrong. Makes me feel like I wasn't legit before wiggle came along....??? Here we've been struggling and now someone famous finally comes our way to bring attention to our illness and we have to rename it for him because the world feels pity for one....????

Sorry, maybe I need to go back to bed, sleep awhile and get back up on the right side...

http://en.wikipedia.org/wiki/Orthostatic_intolerance

Orthostatic intolerance

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Orthostatic intolerance is the failure of the body to properly adjust to an upright position, especially with respect to blood flow, heart rate, and blood pressure.

A common manifestation of chronic orthostatic intolerance is postural orthostatic tachycardia syndrome.

The loss of orthostatic tolerance is also an undesirable consequence of human adaptation to space and has often been emulated in head-down bed rest studies.

On the 30th November 2006 it was revealed that Greg Page, a member of the popular Australian childrens' entertainers The Wiggles had quit the group due to a mystery illness, which was revealed to be orthostatic intolerance. It has been suggested that this illness be known by the layman's term "Wiggles Disease" in honor of him, and in order to spread awareness about this illness.

[Jacquie802]

That doesn't sit well with me either... I hope this doesnt offend anyone, but it almost sounds like a silly name for such a serious illness....We already have a hard time finding doctors that can help us....

[lthomas521]

Yes, "Wiggles" is a silly name, but he's male!

Would anyone dare say that he's quitting his show-business career so that he can go to an occasional doctor's appointment, for the attention?

[Sophia3]

Ok..this name honks me off..how about using his REAL NAME.

Wiggles sounds like GIGGLES and funny this illness AIN'T.

[persephone]

Have no idea who the Wiggles are- they aren't known in Britain at all. I wouldn't get overly irritated about the Wiggles disease name- after all, this Wikipedia article was typed by one person- that's the thing about Wikipedia- it isn't an authoritative source. anyone can type anything and pretend it's true. Michael J Fox has Parkinson's- you don't hear of Fox disease, do you?!

[Wufflebear]

oh that is a bit much.

I went to

http://en.wikipedia.org/wiki/Postural_orth...#External_links

and added my sites link in there. Maybe if they see there are lots of people with this it will help?

dunno...

[jhjd]

As Charlie Brown would say..."Good Grief."

So those of us who have been suffering before are chopped liver? Plus, I know the wiggles are big, but they're hardly the Beatles. And he's not even really known by anybody but hard-core Wiggles fans by name, like Lou Gehrig or something.

Although I suppose it's a double-edged sword...the only bad press is no press, after all.

[MomtoGiuliana]

I wouldn't worry a lot about anything written in wikipedia. But, I do agree that it sounds silly--which is not appropriate for any disease or condition, especially one that is disabling.

He is not THAT famous--most people would be just as mystified by a disease called Wiggles as by a disease called POTS or OI.

[JaneEyre9]

This made me laugh... can you just imagine going up to someone and telling them "I have the Wiggles!" hahaha... must be the mood I'm in today, but that makes me crack up!

I read in a magazine that he had "orthostatic intolerance" so i don't see the media calling it anything other than what it is. Hopefully it will stay that way!

[ksibert676]

xxx

[Kitsakatsa]

This encyclopedia site has tons of duh things. This does not surprise me. I don't like it. I've had to withstand enough doctors laughing in my face because they think "POTS" is a funny term, now the thought of that being made worse is hard for me to swallow. Well, on the bright side- maybe now our story will reach some major talk shows...it all depends on the attitude of this man. He can either make it better for us, or worse.

[jhjd]

No, we are not chopped liver nor was our illness less legit prior to Greg from the Wiggles. It's not about me, you, or us....sorry but I'm not that egocentric....the world does not revolve around me/us. It's about educating those who do not know....including doctors and general population. How can our illness be less legit if most doctors don't even know about this stuff?

You're right, of course. As I said, the only bad press is no press. And wikipedia isn't exactly a DSM when it comes to medicine.

That being said, what I think has been tapped into is the frustration we've all felt at times when we're not being taken seriously. And we're the fortunate ones- there are really a lot of people out there with various forms of dysautonomia- many of whom are probably laboring right now under some misdiagnosis, hoping for a cure, while their health is getting worse without a known cause. So it's like hey, all of a sudden some mildly famous person has it and *poof* it's named after them. Like it didn't exist before them. Add to that the fact that it's a man seems to be legitimatizing it in a lot of people's eyes, and the whole thing is mildly irritating. So the problem certainly isn't with the Wiggle, and we're all glad if people become educated as a result. That's great- and I'm glad for people who want to know more. The frustration is with the attitude that says something doesn't exist until there's a celebrty backing it.

Mind you, I'm not saying that men don't suffer from dysautonomia. But the fact is that men's health problems have historically been regarded as legitimate physical conditions, while women's health problems are often still diagnosed as being some sort of nervous issue.

I hope all of this makes sense.

[Sophia3]

Not liking the name is NOT SOME EGO Problem, excuse me??????????????

I never heard of the Wiggles as I do NOT have children. WIGGLES is a kiddie group name.

If you want to do JUSTICE and name it after the guy, how about Page's disease since THAT is his name.

Wiggles is just too insipid.

If even Greg's disease. You don't name it after a kiddie group.

I would be just as offended if it was called MICKEY MOUSE DISEASE.

And I can think of some people who have already done more for the disease, and been studied in text books and lectures, and nobody is suggesting the illness be named after her?

Why not? Oh, because women are not taken seriously that's why.

Very sad and stupid to argue the name but let's face it..I had the label CHRONIC FATIGUE SYNDROME for a decade...insulting name...to call it CFS when you are debilitated is like calling Diabetes CHRONIC THIRST SYNDROME or TB Chronic Cough syndrome.

CFS has marched and pushed for YEARS for a more serious name for the illness to be TAKEN MORE SERIOUSLY.

SO before we start naming stuff after folks, we have to think of the long term outlook.

It's caused the CFS foundation a lot of energy and dead ends to GET a universal name like ME...and they have made NO PROGRESS after many years.

just my two cents.

[Dizzy Dame]

I went to the link today, but it's been changed. It no longer talks about Wiggles disease.

That's the beauty of Wikipedia, anyone can write anything they want and pretend it's fact, but often people come along and edit it to make it more accurate.

I guess all's well that ends well

[Sophia3]

thanks dizzy..I forgot in my pontificating that Wikipedia is NOTORIOUSLY full of errors.

[momofpreciousboy]

wiggles and POTS are terrible names for this. They need to change POTS to something else.

[Dizzy Dame]

I've never referred to my illness as POTS except for on this site. I always refer to it as PTS (Postural Tachycardia Syndrome), since that's a more appropriate acronym anyway.

Since the lyme diagnosis, however, I now tell people that I have lyme disease.

[Cheryl]

Actually, a study was done & they determined that Wikipedia is more accurate than the Encyclopedia Britanica. Mostly because it tends to be self correcting. Anyone can post any garbage, but it rarely lasts long before it gets corrected.

[Lukkychrm42]

Actually, Heather corrected the page for POTS, but the page for OI (which has a link to the POTS page as how chronic OI often "manifests itself") still calls it the Wiggles Disease.

To me it seems silly, I guess, because I might think of little kids who can't sit still. While it does seem to trivialize it a bit, there are a lot of other diseases out there well-known because of a celebrity, and even by name (Lou Gehrig's Disease..). I definitely appreciate the press it's getting, but I seriously doubt that Dr Grubb or Robertson or Stewart or any of those will start telling their patients they have the Wiggles. I guess there are enough people out there fascinated by celebrities of any type that a medical journal might never sell in a grocery store, but plenty of news and celeb news-based publications fly off the shelves, so I guess I would prefer those to nothing.