Author Topic: Venus touches on Sjogren's Syndrome  (Read 3033 times)

stillinshockwithsjogrens

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Venus touches on Sjogren's Syndrome
« on: March 21, 2014, 10:10:07 AM »
Venus talks about Sjogren's in a CNN Interview. 

Very vague and not informative about the disease.  The interviewer has no clue IMO, but you may want to have a look.

http://www.cnn.com/video/data/2.0/video/sports/2014/03/20/spc-open-court-venus-williams.cnn.html

litliwlowa

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Re: Venus touches on Sjogren's Syndrome
« Reply #1 on: March 21, 2014, 11:07:12 AM »
I watched it, and agree not very informative.

A sidebar though, these types of interviews in a way contribute to the "you don't look sick" syndrome. And granted, there are sjoggies not as symptomatic as other sjoggies who can lead relatively normal lives.

However, there are many of us quite symptomatic compounded by other conditions even though on the outside we don't look sick.

She had an opportunity to EDUCATE the viewers about Sjogrens, even tho the interviewer was lacking in his questions, yet she didn't take that opportunity. The interview was really all about Venus, and actually she controlled the interview more than the interviewer.

5:47 length of video, and sjogrens portion of interview in the first two minutes (initially mentioned 44 seconds into it), but seriously my takeaway was this is all about Venus, and Sjogrens was in effect brought up as casually as discussing the weather.

Just my opinion. But I do think it is important when these interviews come up and include at least a mention of sjogrens. If anything, we get a bird's eye view of the kind of stuff that contributes to "but you don't look sick" syndome.

Clarifying my meaning, when the public see interviews such as this one, wherein Sjogrens is mentioned and this high profile athlete basically dismisses the severity of it as a simple matter of choice to not be defeated by anything.

And really, unless I missed something, the dominant aspect of the portion about Sjogrens focused on fatigue. Actually, listening now the third time from an objective perspective (like I had never heard of sjogrens before), the listener in effect is given on the association of teh word Sjogrens with fatigue, coupled with a brief mention of diet.

I grasp that a lot of people applaud her for coming out about her Sjogrens, I'm frankly disappointed. She has more opportunity than many of us to apply her high profile status in the public eye to really make a difference in viewers' understanding of this invisible AI, yet falls quite short in my view. ;)
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

stillinshockwithsjogrens

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Re: Venus touches on Sjogren's Syndrome
« Reply #2 on: March 21, 2014, 10:46:08 PM »
Litli,

I completely agree.  She has the opportunity to educate the world about Sjogren's and chooses to diminish the seriousness of the disease.  Of course, I'm sure her endorsements would suffer if she did focus and enlighten more people of the disease. 

She does look fabulous and is an extremely talented player.  And, I'm told, very, very nice in person.

gemini052377

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Re: Venus touches on Sjogren's Syndrome
« Reply #3 on: March 22, 2014, 08:38:28 AM »
Very sad she had the opportunity to educate and only briefly mentioned it. Especially since she is supposed to be a Sjogren's Ambassador. I am not saying she needed to make her entire interview about it, but she could have highlighted what it is, how it affects people and the personal impact it has had on her. Following her on facebook, she has talked about being fatigued and some other limitations. I am a little disappointed, It is national AI awareness month.
Mary-Primary Sjogren' s, Hashimoto' s Auto Immune Thyroid, Fibromyalgia, Chronic Fatigue Syndrome, Reynauds, and busy mom of 4 kiddos :)

slccom

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Re: Venus touches on Sjogren's Syndrome
« Reply #4 on: March 22, 2014, 10:52:13 AM »
I am not inclined to think that she really knows that much about Sjogren's. She is an athlete, not a rocket surgeon. I really think she also has little idea how severely it affects many of us. It is hard to talk about what she doesn't know, and she needs sponsors. Talking about how ill she is isn't going to help her.

Sharon

Sooki

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Re: Venus touches on Sjogren's Syndrome
« Reply #5 on: March 22, 2014, 01:35:01 PM »
Each of us chooses how we describe our health to others. While I have no secrets from friends and family,  I can't imagine talking about any limitations I have with my clients, nor any responsibility to educate them about my affliction.  She has worked hard to get where she is and part of her public image is health and vitality.  I can totally understand why she puts on the public face she does.  I think she's handling her interviews with great grace and understatement. 

I am sure she works really hard to be able to compete while having Sjs.  She has publicly announced that she has it and has described some of her symptoms and dietary interventions.  She may also be taking meds for it as well, but she has no responsibility to tell the world she's on immunosuppressants while competing.  It's nobody else's business and it could hurt her career for people to think she has an unfair advantage from drugs she's taking. 

She has no responsibility to me except as a public athlete I admire.  She probably knows a lot about Sjs at this point - she has physicians and trainers advising her on all its aspects.    It's not in her interest to shout to the world how nasty her disease is and how badly others have fared from it.   She's an athlete people look up to; she's a role model for many girls all over the world.  She's living up to her responsibilities in that.

If we have any responsibilities at all regarding Venus, it should be supportive of her.  We, more than most, should know how hard she's working to maintain.  We should be cheering her on, not trying to make her give a public confession of her hardships.  Go, Venus! 
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quietdynamics

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Re: Venus touches on Sjogren's Syndrome
« Reply #6 on: March 22, 2014, 02:16:11 PM »

The video is CNN sports.. not medicine.
(We do not even know if she did say more and it ended up on the editing floor?)

Venus is an athlete, who happens to have Sjogrens.
I think, hope her top physical and mental conditioning through the years helped her. 

Her statement in the video is that she wants to be remembered for what she has done in tennis.. she worked hard and still is, she put the sweat equity in. Her dream.

Here is the link to volunteer to become a Sjogrens Awareness Ambassador
http://info.sjogrens.org/become-an-awareness-ambassador
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

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stillinshockwithsjogrens

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Re: Venus touches on Sjogren's Syndrome
« Reply #7 on: March 22, 2014, 09:30:30 PM »
If she had cancer and was interviewed on CNN Sports, do you think the subject of cancer would be sidelined during the interview?  I'm not trying to compare cancer to Sjogren's by ANY means. 

I admire her as an athlete.  And as a really nice person, told firsthand.  I do root for her.

The Caption for the CN interview is, "Venus Fights Incurable Disease".  So, in this regard, I am extremely disappointed it was not discussed with more transparency.

litliwlowa

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Re: Venus touches on Sjogren's Syndrome
« Reply #8 on: March 23, 2014, 03:26:12 AM »
Quote
The Caption for the CN interview is, "Venus Fights Incurable Disease".  So, in this regard, I am extremely disappointed it was not discussed with more transparency.
I agree.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

quietdynamics

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Re: Venus touches on Sjogren's Syndrome
« Reply #9 on: March 23, 2014, 07:14:17 AM »

CNN "Venus Fights Incurable Disease"

Ugh.. I didn't even see it.. just clicked on the link.

CNN also has the same video with article under Venus Williams: The champion trying to slam Sjogren's syndrome
There you can leave comments, I usually leave medical links to help awareness.
http://edition.cnn.com/2014/03/20/sport/tennis/venus-williams-sjogrens-syndrome/index.html

DH and a family relative travel to NYC yearly for the tennis matches. If DH was not living this along side me and was 'silly' enough to just be educated by what he read about an athletes' experience with SJS.. he would be very much mistaken. The relative at first did look at me with "screwed up eyes' and offered 'unsolicited advice".

So unfortunately, many will have the impression that 'we' are just being lazy, (one coach said this of Venus a few years ago) and that will include the professional who is into sports as well..  :(
Media is powerful, promotes ignorance  when incorrect via exclusion of information.

.. Thus our opportunity to leave  cogent information in media when we can.
« Last Edit: March 23, 2014, 07:42:17 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

litliwlowa

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Re: Venus touches on Sjogren's Syndrome
« Reply #10 on: March 23, 2014, 09:34:33 AM »
well stated, quietdynamics, well stated indeed.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

Cheryl

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Re: Venus touches on Sjogren's Syndrome
« Reply #11 on: March 23, 2014, 05:52:56 PM »
Sooki, if we had a "like" button, I would like your post!  We all want Sjogrens to get more attention, especially in the medical community, but I think it's unfair of us to expect Venus to promote her AI condition when she is still competing as a world class athlete. 

Let's cheer her on, instead.  Venus, your strength and performance are an inspiration; may your health allow you to compete for many more years!
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Carebear

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Re: Venus touches on Sjogren's Syndrome
« Reply #12 on: March 23, 2014, 07:03:54 PM »
Good point, Cheryl.  I was just thinking the same thing.  Both she and her sister have always conducted themselves in an admirable way, publicly.  That's all we can ask of our athletes.

Considering all the bad behaviour we witness these days, I'd like to say "Thank you Venus, for being a champion for women everywhere."
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Velcro

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Re: Venus touches on Sjogren's Syndrome
« Reply #13 on: March 25, 2014, 08:41:49 AM »
After her first couple of shows/interviews I saw where it was touted as speaking to her about Sjogrens, I quit looking to her as a spokesperson for Sjogrens.  She always glosses over it.  I have no issue with her wanting to concentrate on her career, I just wish they would just do that then and not even bring it up.  I do think it helps stereotype those with the disease when everyone can say, "Oh so you have Sjogrens, like Venus.  Well then get on the treatment plan and then you can win Wimbledon and play tennis for hours."  And yes, I actually did have someone say to me one time, "Oh isn't that what Venus Williams has?  Well then that's great because it hasn't affected her."

Again, not her fault.  I want a Michael J Fox, who made his disease a top discussion point for everything he does.  I think he shows the disease in a good light, between the struggle and living with it, but living.

slccom

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Re: Venus touches on Sjogren's Syndrome
« Reply #14 on: March 26, 2014, 02:31:56 PM »
Michael J. Fox is not looking for sponsors though. Perhaps when she is out of professional sports Venus will be able to be honest with herself and everyone else about the affects of Sjogren's.

And Fox is absolutely amazing. I was so sad when his show was canceled. It was really, really good. No flith, no innuendo, just good, clean humor.

Sharon