Re: Famous EDS people...pianist, actors, scientists, lawyers, doctors...EVERYBODY!

[Guest guest]

Well, I think...that at one time a while back we discussed who we *thought*

might have EDS--and I believe that Dick Van Dyke's name had come up as one

who has mentioned that he has EDS. We had also added that we felt Jerry

might also and in addition (excuse me for brain fart--) the newer

comedienne who played in Dumb and Dumber...and many other movies...I forget

his name--who could make all those rubber faces without a hypermobile jaw?

As to anyone else, I think this is new territory because I don't feel it was

diagnosed that often in the past unless it was very, very severe--or

vascular EDS. How wonderful for you to run into a family therapist with

EDS!! (Well, not really, but you know whta I mean!)

B

Famous EDS people...pianist, actors, scientists, lawyers,

doctors...EVERYBODY!

> One occasionally hears of a famous EDSer...a pianist or singer. What about

> actors and anyone else, especially those known to have so called " rubber

faces. "

> Is there a website that lists EDSers who made special accomplishment

because

> of their unique EDS situation? Or even just those of any famous people in

> history who may have mentioned symptoms of EDS?

>

> Also, where are our EDSers doctors, lawyers, medical professionals? They

by

> being an EDSer will REALLY understand our problems. Or Not. Since there

are so

> many symptoms.

>

> I guess I was lucky when my current family therapist responded to my

> announcing that I might be an EDSer with a demonstration of his own

stretchy skin and

> his eyelids. I cannot do the eyelid skin " stretch " . :-]. but I have since

> seen a picture of it online. I mean, what are the odds.

>

>

>

[Guest guest]

Someone once told me that Meryl Streep had classic type EDS, but I doubt it.

I don't know why they thought she had it but who knows?

Jill

[Guest guest]

My EDS friend and I were watching the E! Channel and Jim Carey came on doing

his bit for Bruce Almightly and he was rubbing and itching his neck and

pulled on his skin and bingo it pulled straight out like a classical EDSer.

We both jumped on that one right away. Do not expect him or any other

famous EDSers to speak up as it would be career suicide to speak out on

this. One reason is insurance. No studio would carry them for insurance.

No insurance would carry them on personal insurance as they are not on any

corporate plan. So you see it is not good for them to get DXed no more

thani it is for us. Think of the sports people - I have seen major EDSers

there in professional sports. J. Fox has made great strides with

Reeve. It is yet to happen for us but maybe....someday??

Love Whole Bunches of Our Day Will Come, Carole

[Guest guest]

Here's two more possible famous EDSers (believe it or not):

1) Einstein - he died of a abdominal aneurism that had been with him a

long while. Almost certainly a connective tissue disorder. Suicide of

a sort, he was so tired of being in pain he refused surgury to brace

the aorta and keep it together, which could certainly have prolonged

his life. There have also been few more sedentary men in history,

although he did do a little very gentle sailing, the closest he got to

exercise.

2) Bin Laden - the CIA had suggested that he was Marfan's, but EDS is

a much better bet. Sedentary, has to lie down a great deal, body type,

etc. Someday we should discuss the bitterness of being ill like an

EDSer on the site...

Admittedly, this message is more ox-tail than chicken soup for the

soul, but there you go.

Russ J

[Guest guest]

One more thought on famous EDSers - wouldn't it be ironic if the

famously loose-limbed Jerry has EDS but has spent his life

raising money for muscular dystrophy instead? Of course, EDS hadn't

even been discovered, back then.

[Guest guest]

> One more thought on famous EDSers - wouldn't it be ironic if the

> famously loose-limbed Jerry has EDS but has spent his life

> raising money for muscular dystrophy instead? Of course, EDS hadn't

> even been discovered, back then.

EDS dates back to the 1800s. Jerry's old, but not that old.

[Guest guest]

Doubtless EDS predates Homo Sapiens - but the discovery of EDS doesn't

does it? What I remember about my reading is that Ehlers-Danlos is

still alive, discovered the Syndrome in the 1960s(?) and is now

researching more common illnesses where he feels he can be more

useless... am I completely wrong about this?

MS seems to have first arrived in Europe in the 1800's, the disease

itself - do you mean that slow discovery?

> > One more thought on famous EDSers - wouldn't it be ironic if the

> > famously loose-limbed Jerry has EDS but has spent his life

> > raising money for muscular dystrophy instead? Of course, EDS

hadn't

> > even been discovered, back then.

>

> EDS dates back to the 1800s. Jerry's old, but not that old.

[Guest guest]

> Doubtless EDS predates Homo Sapiens - but the discovery of EDS doesn't

> does it? What I remember about my reading is that Ehlers-Danlos is

> still alive, discovered the Syndrome in the 1960s(?) and is now

> researching more common illnesses where he feels he can be more

> useless... am I completely wrong about this?

The first reports of EDS were written in 1657

Ehlers and Danlos were two different people. Ehlers from Denmark and

Henri- Danlos. These two reported findings in 1899 and 1908.

The name Ehlers-Danlos Syndrome was proposed in 1936 in an article by

Frederich Parkes-Weber published in the British Journal of Dermatology.

For more information, please read " Why 'Ehlers-Danlos Syndrome'? " as posted

on the UK EDS Support Group website at:

http://www.ehlers-danlos.org/Info%20Sheets/why_eds.htm