Author Topic: Celebrity with Sjogren's?  (Read 3802 times)

Bucky

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Celebrity with Sjogren's?
« on: August 07, 2008, 02:04:39 PM »
Just curious . . are there any celebrities with Sjogren's?  It seems when a disease directly affects a celebrity or one of their loved ones they jump on the bandwagon to find a cure, etc.  Because they have the press exposure and millions of dollars to "donate" they seem to get things done whereas us "normal, everyday" people don't have the network of connections or BIG BUCKS to fund such a venture. 

We need an Oprah Winfrey or someone with clout to get the medical funding, research, benefits, etc. that is needed to fight this disease.  Speaking of Oprah . . bet she's never EVEN heard of Sjogren's . . maybe we should all bombard Harpo with requests to have a show about it!!!  ;)  She's always saying, "knowledge is power" . . . let's challenge her to learn about this disease that affects millions.

Bucky
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jdryer

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Re: Celebrity with Sjogren's?
« Reply #1 on: August 07, 2008, 03:18:36 PM »
Hi Bucky,
I agree !  I doubt that Oprah has heard of ss, everybody who asks what's wrong w/ me  NEVER heard of it.  I feel like a broken record & am feeling more than a little discouraged even though I am just starting my "process".  It's hard to say if any celebrity has it because I'm pretty sure they would have a really hard time doing their jobs.
jd

Katybarstool

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Re: Celebrity with Sjogren's?
« Reply #2 on: August 07, 2008, 03:28:59 PM »
Bucky

We are all celebrities here - didn't you realize  ;D

Kathyx

eyeamdry

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Re: Celebrity with Sjogren's?
« Reply #3 on: August 07, 2008, 03:36:15 PM »
I also think it would be good to have Oprah (or someone of her stature) to take Sjoggies under her wing so to speak, as her cause.  Or one of them.  However, Oprah is probably hit with a dozen causes every day and has to pick and choose her "causes" objectively and carefully.  I know this has been brought up on another board or two that I belong to and it's always good to hear it, but our plight just isn't the worst of the lot.  (Now don't go plastering into me, PLEASE.) It just "ain't as easy as getting Oprah involved. "

On the other hand, anyone wanting to take up the cause might just have the right touch!!!!!!!!!!

Pooh

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Re: Celebrity with Sjogren's?
« Reply #4 on: August 07, 2008, 05:20:05 PM »
Bucky,
I don't mean to dampen you spirit about Oprah, but we did bombard her with requests a few years back and they never even took the time to acknowledge our letters.  So, think about another celebrity with more heart. 

Pooh
« Last Edit: August 08, 2008, 12:46:34 AM by Pooh »

quiger

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Re: Celebrity with Sjogren's?
« Reply #5 on: August 07, 2008, 07:25:25 PM »
Hi Bucky,

We thought maybe Janine Turner may have Sjogren's when she started doing a commercial for Restasis. but from what we have heard, that isn't the case.

Pooh is right, we bombarded Oprah with letters from our staff and our members here. We gave both statistics and personal experiences. We both emailed and sent letters by snail mail and coordinated them so they would all arrive around the same time hoping to catch their attention. At the same time we also bombarded Montel Williams. We felt he would understand our plight since he has MS. But, no luck with either one of them. Hopefully at some point a celebrity will come forward and admit they have Sjogren's and will start a promotion for reseach money. So many people have Sjogren's and don't realize what it is, it seems possible that at some point, that will include a celebrity. (Although we wouldn't wish this on anyone)

quiger

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irish

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Re: Celebrity with Sjogren's?
« Reply #6 on: August 07, 2008, 10:56:08 PM »
Don't get too disheartened folks. In the 5 years since I have been diagnosed there is more information out there in magazines and TV plus Steve Taylor with the Sjogrens Foundation has been working hard too get funding for more research.

Also, there are more and more Universitys doing research studies. The gal that headed up the big one at the university of Mn has moved south and will be heading up one with another university. The study I was in was headed up by BioSips---can't remember what this stood for but it was a very comprehensive study. Irish >:(

kathylee

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Re: Celebrity with Sjogren's?
« Reply #7 on: August 07, 2008, 11:16:33 PM »
Gee Maybe for 'giggles' Paris Hilton would read a prepared piece on youtube like she did a week ago. This could be right up her alley....being new to the humanitarian world....see at "least people wpuld say "what is Sjogens?"

HAH!
Kathylee

ph

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Re: Celebrity with Sjogren's?
« Reply #8 on: August 07, 2008, 11:26:37 PM »
Hi Bucky,

Have often thought the same thing.

And have been hoping with the program on Discovery health that we might get more publicity.


After 5 years of sending announcements of my sjogren's seminars to the local tv station, I got a response last week. She wants to do an interview with the doctor i have speaking and me about my "condition". That was progress, but I felt I had to tell her , that I wasn't a patient of his and was not being treated for what he was addressing. So far no response.

And it the one step forward, two steps back category, I got a call this morning from the place I hold the meetings. They had seen the advertisement for the next seminar and are wanting proof that i am a registered charity and to explain that i can't charge  to cover the flyers and mailings. Since I am not a charity  , and can't afford to pay for everything myslef. it may be the end of the educational seminars.

sss.sjogrens.netfirms.com

LenV

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Re: Celebrity with Sjogren's?
« Reply #9 on: August 10, 2008, 09:58:39 PM »
Anyone else have problems reading the "pink" posts like the one ph just posted?  I find myself having to squint hard to read it and just wondered if it was difficult for anyone else?  Sorry to get off track but I wanted to post this close to the original posting.

ph...I'm so sorry you are having trouble with the meetings.  They are so important.

Billye

kathylee

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Re: Celebrity with Sjogren's?
« Reply #10 on: August 10, 2008, 11:35:22 PM »
Billye
Yes I sure agree. It took me years to find out that one of the things that realy helps me read better is CONTRAST! Yet Also black on white can float on a page..blurr. Text books frequently the worst about this.  A cream tone paper with some black text...like a paperback works tho trade paperbacks are best in that they are usually a bigger page than regular paper backs. When I buy journals I look for 'dirty' white or blue-white paper. It is so much better.

Kathylee

Katybarstool

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Re: Celebrity with Sjogren's?
« Reply #11 on: August 11, 2008, 06:43:03 AM »
Can I join in?

I would love to ban people using shiny paper - it makes my eyes so uncomfortable. Anyone else have this problem?

Kathy

Joe S.

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Re: Celebrity with Sjogren's?
« Reply #12 on: August 11, 2008, 07:01:57 AM »
When I was doing switch translations for Qwest. They printed my jobs on ultra-bright white paper. One of the the gals in the office convinced management to go to pastel paper and it was sooo much better. I selected a different set of colors for the forum to make it easier for me to read.
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Linda196

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Re: Celebrity with Sjogren's?
« Reply #13 on: August 11, 2008, 07:06:12 AM »
When I want to read a post that has a coloured font that I'm having trouble with, I highlight it (as if to cut and paste) and I find the white on blue easier to see.
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Pooh

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Re: Celebrity with Sjogren's?
« Reply #14 on: August 11, 2008, 08:10:00 AM »
Billye,
I just don't read the ones in color, they are just to hard on my eyes.  Whenever I come across one my eyes seem to react painfully.  I find it difficult to focus on it, so I just don't read it. 

Hugs, Pooh