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View Full Version : Venus Williams has Sjogren's



magistramarla
08-31-2011, 09:20 PM
Check out this CNN article about Venus Williams: http://news.blogs.cnn.com/2011/08/31/venus-williams-pulls-out-of-u-s-open-citing-autoimmune-disease/

Venus Williams had to cancel her tennis match due to the joint pain and fatigue caused by Sjogren's.
It seems that it was at first believed that she had a virus, but she now knows that she has Sjogren's.

It is a shame that our wicked disease might end her bright sports career, but I certainly hope that she continues to be outspoken about it and brings some public attention to Sjogren's and other AI diseases. There is a golfer who has been speaking out about Psoriatic Arthritis lately. I hope that these folks stir up some interest in funding some research.
Hugs,
Marla

rob
09-01-2011, 05:05 AM
I was watching Piers Morgan last night and there was a quick blurb saying that she had to cancela bunch of games because she "has an autoimmune disorder that causes her joint pain and bad fatigue". But they didn't say which autoimmune disorder it is. My mission this morning was to find out which one, and you just made my mission much easier Marla.

If anything good can come of this, it's generating more attention, awareness, and maybe some funding for more research. I hope she can keep playing, as she is indeed a brilliant tennis player.

Rob

tgal
09-01-2011, 06:25 AM
Venus Williams, the tennis player, has been diagnosed with an AI disease. For now it is getting AI diseases a bit of TV/News play. Hopefully this will bring help to us all!

http://www.latimes.com/health/boostershots/la-heb-venus-williams-and-sjogrens-syndrome-can-autoimmune-disease-be-fixed-20110831,0,1792248.story

Manderson
09-01-2011, 08:36 AM
Phil Mikelson is the golfer with psoriatic arthritis.

magistramarla
09-01-2011, 07:31 PM
There was a clip on TV today of Venus saying that the fatigue was slowing her down and that her feet and hands felt so numb that she was having a difficult time holding her racket or chasing the ball. I wanted to have that fraking neurologist of mine by the nose and make him watch that clip over and over.
He tried to tell me that Sjogren's is ONLY dry eyes and dry mouth and is easily treatable. He also told me that it couldn't be the cause of my numb feet and that there is absolutely nothing wrong with my muscles.
I'd like to see him tell Venus that!

Manderson
09-02-2011, 07:09 AM
It's too bad you need celebs and sports heroes to get any attention.

Bonita
09-02-2011, 07:09 AM
Seems some doctors need to go back to school or listen to their patitents more. Even lyme diease is getting taken more seriously nowadays. Bonita

rob
09-02-2011, 09:20 AM
I'd like to see him tell Venus that!

She'd probably open up a whole can of autoimmune whoop-ass on the jerk.

I'd buy tickets to that!

KCat
09-02-2011, 10:23 AM
I hear ya, Marla. My docs have been thinking maybe I have Sjogren's lately and have tested me three times. My CRP has been quite high but I've got no obvious inflammation (no pleurisy or anything like that) so they are struggling to figure out why the CRP is high. Sjogren's makes sense to them because then they can say it's just the general joint pain and inflammation caused by that plus the other "relatively" mild stuff it causes (as in, no major organ involvement). But I keep coming up negative for it.

I always get just a tad frustrated by "celebrity illness". Like Manderson said, it's sad that it takes big names to get attention for the illness. It's equally sad that the flicker of attention is soon gone. So I always have very mixed feelings about this stuff. I do, however, feel for what she is going through. And it does show that these illnesses are not about being "lazy" as so many people often say about us.

magistramarla
09-03-2011, 09:03 PM
KCat,
A lip biopsy is a good way to dx SJS. I was lucky and had one blood test with high SSAs and SSBs back in Texas. However, there is an ongoing study of SJS being done at UC San Francisco. Since I have to go to UCSF for my botox shots for Spasmodic Dysphonia, I volunteered for the study. An expert did the lip biopsy, and it came back positive.
At least my stupid local rheumy can't deny that I have SJS, but I can't convince her that it is more serious than she thinks.
The lip biopsy isn't too bad. They make a small incision inside of your lip and remove six or seven saliva glands for testing. I ate soup for a couple of days, and the stitches fell out on their own soon after. I can still feel a tiny lump there with my tongue, but it is no big deal. I'll get another one in a year when I go back for the two year follow-up.
Some people have complained of botched biopsies and severe numbness afterward, so it seems to be very important to have it done at a teaching hospital, by a doc who knows what he/she is doing, and with a lab that is used to dealing with them.
Hope this helps.
Hugs,
Marla

KCat
09-03-2011, 09:39 PM
heh. Thanks Marla. I think I'll be fine not knowing for now. LOL! I've had three neg. tests. Only the CRP is suspect and that could point to anything that is inflamed. My ESR is fine for whatever reason but it's never been terribly high even when I was at my sickest and losing weight at an alarming rate and had my positive ANA titre. Back then my CRP was normal! Go figure.