Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Chris on October 10, 2013, 01:33:38 PM

Title: Thank you Dr Oz and Venus!
Post by: Chris on October 10, 2013, 01:33:38 PM
Finally Dr Oz discusses Sjogren's on his show today!!!
Title: Re: Thank you Dr Oz and Venus!
Post by: jazzlover on October 10, 2013, 01:37:45 PM
Dang! I forgot to tune in. I have it on now. I saw yesterday that she would be on his show.

Hope you guys got to see Katie Couric yesterday. She had a discussion on Lyme disease.
Title: Re: Thank you Dr Oz and Venus!
Post by: Chris on October 10, 2013, 01:44:10 PM
Oz usually repeats in the AM the next day on East Coast
Title: Re: Thank you Dr Oz and Venus!
Post by: P.Trish on October 10, 2013, 03:17:34 PM
Thanks ! I'm recording it (I live on the West coast).
Title: Re: Thank you Dr Oz and Venus!
Post by: powderpuff on October 10, 2013, 03:36:48 PM
I watched the show as well and the FB comments on the Sjogrens.org FB page. I saw many unhappy comments about how the disease was minimized and Dr. Oz only discussed dry eyes and dry mouth and organ involvement was not discussed.

I'm happy the discussion is still going on. May it never stop!

PP
Title: Re: Thank you Dr Oz and Venus!
Post by: Chris on October 10, 2013, 05:57:54 PM
I agree but it was mentioned on his show!!  Baby steps!!!
Title: Re: Thank you Dr Oz and Venus!
Post by: slccom on October 10, 2013, 11:06:16 PM
His advice was always really shallow and showed no understanding of good research. Since Dr. Oz started hawking his own vitamins, he has lost all credibility with me, anyhow.

Sharon
Title: Re: Thank you Dr Oz and Venus!
Post by: gurs on October 11, 2013, 03:25:13 AM
They all seem to minimize SS..why dont they show a video of one of us, bedridden, or getting some Rituxan, IVIG, or something like that? and also discuss more of the neuro issues.

One day? A girl can dream cant she? ha ha

Gursie
Title: Re: Thank you Dr Oz and Venus!
Post by: Skylar on October 11, 2013, 04:16:54 AM
Dr. Oz never fails to disappoint - it's entertainment and when we expect truly useful information he doesn't deliver.

Sadly another missed opportunity - especially since you consider that Sjogren's is, I believe, the second most common autoimmune disease. I don't know about you, but when I was diagnosed with it all I knew was it was dry eyes and dry mouth - big whoop. I had no idea all the other crap it was doing and will continue to do on my body. I didn't even know the damage that could come about on your teeth and digestion from dry mouth and the potential for damage to the eye from dryness.
Title: Re: Thank you Dr Oz and Venus!
Post by: Christine435 on October 11, 2013, 05:05:07 AM
I saw it. In my humble opinion, the show was a travesty. Making a mockery of an illness is worse than having the exposure for the illness. Enough said.
Title: Re: Thank you Dr Oz and Venus!
Post by: SjoAmy on October 11, 2013, 05:50:19 AM
We are asking doctors to think out of the box.  Most think of boxes inside of boxes without deviation from textbooks and research. 

Indeed, we can and do get systemically sick.  I hate to say this, but if you want a public figure to bring attention to the severity of Sjogren's Syndrome......that public figure is going to have to meet some of the severe intensity of our disease first, and get systemically sick.

The day that the public figures have to go through IVIG....then we'll hear more intense discussion.

I long for the day that they all realize that Sjogren's Syndrome is similar in character and overlapping of Lupus, RA, Fibromyalgia, Lyme Disease, and others.
Title: Re: Thank you Dr Oz and Venus!
Post by: Carebear on October 11, 2013, 07:55:14 AM
I have long stopped watching Dr. Oz.  His focus has been on quick weight loss gimics for some time now. 

I am not surprised he minimized Sjogren's. 
Title: Re: Thank you Dr Oz and Venus!
Post by: Velcro on October 11, 2013, 09:07:08 AM
I saw it. In my humble opinion, the show was a travesty. Making a mockery of an illness is worse than having the exposure for the illness. Enough said.

This!
Title: Re: Thank you Dr Oz and Venus!
Post by: P.Trish on October 11, 2013, 09:12:15 AM
Huge disappointment - Dr Oz's 'theatrical' depiction was almost embarrassing in its attempt to portray sjogrens in a comedic theme,which didn't even  touch on the seriousness of the disease.

 Venus simply does not want to talk in depth about her treatment/maintenance program.

My husband was more upset than I  - growing weary of Dr. Oz's skits, in general. Am I - alas - losing my sense of humor?

Dr. Oz needs to read these postings!
Title: Re: Thank you Dr Oz and Venus!
Post by: babsinga on October 11, 2013, 10:33:49 AM
Hi I didn't see it but what bothers me is that all the references to the show online talk about how Venus Williams is on an anti inflammatory raw vegan diet. What they do not mention is that she is also on Plaquenil. THey make it sound like her solution and cure to Sjogrens is her diet.
Title: Re: Thank you Dr Oz and Venus!
Post by: Ripvanann on October 11, 2013, 10:54:40 AM
Speaking of celebs/famous people getting these diseases; ever wonder why NO ONE, literally not one person in the White House has an AI (that we've heard of)? Nor do they get cancers and the like. When we hear that one is sick (rarely), they're "cured" in day.

Ted Kennedy was the youngest person I can remember actually dying from cancer and he was 77. It's just that pure statistics would say somethin' ain't right here. Right? Anyway, not a conspiracy theorist (much =) ) but it does make me ask "How?"

I've never watched Dr. Oz  nor listened to him because his advertisements annoyed me, didn't want to subject myself to an entire show. Venus, regardless of how bad she's been hit by this, should speak up for us. Surely she's done her research enough to know what could happen to her. Obviously she wants to get publicity via her disease, then at least give a voice to the voiceless here and not be entirely self serving.
Title: Re: Thank you Dr Oz and Venus!
Post by: Linda196 on October 11, 2013, 11:43:06 AM
Correct me if I'm wrong, but didn't JFK suffer from Addison's Disease? I don't remember any particular pains taken to avoid disclosure, but I do remember hearing of secret world wide "stashes" of prednisone to be available at a moments notice if needed.
Title: Re: Thank you Dr Oz and Venus!
Post by: warmwaters on October 11, 2013, 01:37:13 PM
There have been many people with health issues in the White House, Congress, and other public offices. It is only in the past few years (maybe 20-30) that health issues were discussed publicly - before then those things were kept very hush-hush. No public figure wanted to admit any weakness, and it was a much more private era. Even now my elderly parents tend to whisper the word "cancer" like they are saying a bad word. 

FDR was crippled from polio, but there are only a few pictures of him in his wheel chair. There was a gentlemen's agreement with the press that these sorts of things were private. JFK had a bad back and Addison's, and according to some accounts a raging drug habit, but again, all hush-hush.

Betty Ford was one of the first public figures to be open about health issues - she was diagnosed with breast cancer while in the White House, and it was a big deal that she was open about it. Later she admitted to addiction issues, and opened the now famous Betty Ford Rehab. Bob Dole had mobility issues, and had all sorts of ways of disguising them.

Pols are afraid a health problem can be used against them.  You can picture the ads - "Jane Smith has periods of lightheadness .... Do you want her to be in charge?"
Title: Re: Thank you Dr Oz and Venus!
Post by: KS123 on October 11, 2013, 01:58:02 PM
im just pleased it was on tv!!! a huge step for us.. i am so tired of people saying what is that??? and i have to explain and say its related to lupus--(they always know what lupus is)

i was diagnosed age 19.. w/ fatigue..  bad symptoms didnt begin until age 32. i am 38 now and on disability.. but my attitude has changed and i do the best i can.. i am even on an online dating site.. why not!   lots of people have lots of things wrong w/ them but we have to keep trucking!
Title: Re: Thank you Dr Oz and Venus!
Post by: Dee on October 11, 2013, 08:41:11 PM
How disappointing to hear this, but it friggin figures. Maybe we should all leave comments on his Facebook page that sjogrens is much more than sicca and that as actual sjogrens patients we feel misrepresented and done a great disservice as his show is watched by many, and flood his network with letters re the same. They can be short sweet and too the point.
Title: Re: Thank you Dr Oz and Venus!
Post by: slccom on October 11, 2013, 08:46:32 PM
Don't overdo the sweetness part!

Soft-pedaling the illness really hurts us.

Sharon
Title: Re: Thank you Dr Oz and Venus!
Post by: Dee on October 11, 2013, 08:49:08 PM
Duly noted they can be short and to the point
Title: Re: Thank you Dr Oz and Venus!
Post by: lolo1979 on October 11, 2013, 09:27:53 PM
My husband said "wow babe! You've got a bunch of angry women inside you attacking you. You are an angry woman filled with more angry women!!!" No wonder you feel so bad! (Disclaimer: I may have been a little hormonal and crabby that day!)

In general I am usually not satisfied with the coverage dr oz gives anything on that show. He never dedicates the full hour of time to the "main" topic, which doesn't allow for good coverage even if he wanted to.

He did a show about Toni Braxton and her lupus recently and it was even less helpful and informative than the one on Venus. Just my humble opinion.
Title: Re: Thank you Dr Oz and Venus!
Post by: gurs on October 12, 2013, 03:37:00 AM
I stopped watching OZ because his show seems to focus on weight loss....

Yes, wonder what other medical therapies Venus is on? the all tend to keep it quiet..probably for legal issues?

Im sure someone in government has AI issues, but would rather keep it quiet.

Ughhhhhhhh..

Gursie
Title: Re: Thank you Dr Oz and Venus!
Post by: adaubrey on October 12, 2013, 11:54:58 AM
I gave up on Dr Oz a long time ago and seeing this segment reminded me why.
UGH that silly little immune skit. UGH. 
Title: Re: Thank you Dr Oz and Venus!
Post by: Nancy60 on October 12, 2013, 01:58:04 PM
I stopped watching him several years ago too,  his approach just seemed demeaning to the general public the way he discusses illnesses and the human bedy and how it functions. I also got the feeling he is more into it because he loves being in the spotlight.  He just hasn't impressed me much as being very sincere. Just my humble opinion though.

Nancy
Title: Re: Thank you Dr Oz and Venus!
Post by: SjoGirl on October 13, 2013, 12:50:13 PM
I have found that many physicians and others are addressing health issues, but their solution in too many cases is taking supplements that they sell. While I am not poo pooing all supplements, I am increasingly realizing that the sale of supplements is an unregulated and very lucrative business.

I take some supplements, but have also learned from my PCP that too much of a supplement is not a good thing. Also, research increasingly suggests the best way to ingest and have your body use vitamins is through food.

I take only a multivitamin that has iron in it (because I am anemic) or iron. Otherwise I have dramatically changed my diet to ensure that I get my vitamins that way. My readings, D, B12, etc. have all been in the normal range since.

Title: Re: Thank you Dr Oz and Venus!
Post by: KS123 on October 16, 2013, 03:19:05 PM
i know for awhile Dr. Oz was suggesting omega 7 i believe for sjogrens.. well my docs said no don't take.. and i do use coconut oil a lot-mostly cause it is supposed to be healthy and because it makes my veggies a little sweet.. 

the only supplement besides natures made multi vitamin i take is an $$ fish oil which seems to help my mgd..i still have it but it has gotten about 30% better on it... i just hate taking so many darn pills.
Title: Re: Thank you Dr Oz and Venus!
Post by: Velcro on October 17, 2013, 10:58:27 AM
I'm very disappointed in Venus as well, as when she does speak about it, it is very light and doesn't get into details.  I want a spokesperson who will shout from the rooftops and doesn't care to share the entire story of their treatment and struggles instead of downplaying it.

I know, it was a celebrity face to put to the disease, but I'm tired of hearing, "Oh so you have what Venus Williams has?  Well that's really good because she's doing absolutely great and still playing hard!"
Title: Re: Thank you Dr Oz and Venus!
Post by: finallyadx on October 17, 2013, 01:24:19 PM
I am with you Velcro - we need a spokesperson who will tell the whole ugly truth about sjogrens and not sugar coat it.  As far as Dr. Oz is concerned - sounds like he has never treated anyone with sjogrens before so he should not speak about it. 

Although I think it is great that sjogrens is receiving more publicity it needs to be the whole truth of what it could be and what it can do not just how well a celebrity seems to be doing after being diagnosed. 
Title: Re: Thank you Dr Oz and Venus!
Post by: quietdynamics on October 17, 2013, 03:18:20 PM

There is a comment section on his site.
I left one with links.  So far it is the only one on Sjogrens...come on folks spread the word. Write a comment.

Venus, is still young and a "commodity" she will promote her product lines and positive "I can do" attitude. She has a fitness journal on her "Elleven" site. I am not sure, I think she will be making health videos, etc.

Who would buy videos from someone on the decline? Progressive, no cure path?

I was happy that she pointedly stated: that she did not have dry eyes and mouth as her primary symptoms and that it took her 7 years to get a Dx, Oz seemed taken aback...even with the 6 month follow ups.
Guess Oz could not pick up on that as it countered his dummied down cartoon sketch.

The prior segment on Mind/Body was good. We are influenced by our the environment we create.

 
Title: Re: Thank you Dr Oz and Venus!
Post by: Carolina on October 17, 2013, 03:56:16 PM
I don't watch TV, hardly ever.

I have you guys for all the fun and games I'll ever need!

Hugs,  Elaine
Title: Re: Thank you Dr Oz and Venus!
Post by: quietdynamics on October 18, 2013, 12:26:35 PM
Carlolina ..I do not watch much either...for giggles and drama I watch 'national' news.

I googled the video when I saw the post on the forum.

Here is my comment:
"Barbara  ยท Fairleigh Dickinson University
The brief nod to Sjogrens was sadly lacking and simplistic. Within the scope of the ability of this chronic, and often systemic (organ) progressive disease, for which there is no cure, the ramifications of possible disability and effects on on family can be devastating. Often medically referred to as the "kissing cousin" of Lupus. Here is more information from John Hopkins Medical http://www.hopkinssjogrens.org/disease-information/ and a view of "real lives" of people with this disease on Sjogrensworld.. http://sjogrensworld.org/forums/index.php As Venus stated many people Dx'd with Sjogrens may not immediately present with Dry eye or mouth, rather other symptoms."

I still hope posters and readers will add a comment.
Anyone, at anytime who googles sjogrens and or Venus W. will have the video come up and may see the comments...we can spread information.
The video has 114 comments on only one re: Sjogrens.  :(
Title: Re: Thank you Dr Oz and Venus!
Post by: slccom on October 18, 2013, 01:18:58 PM
I can't find the place to leave comments. Where is it?
Sharon
Title: Re: Thank you Dr Oz and Venus!
Post by: quietdynamics on October 18, 2013, 05:26:23 PM
http://www.doctoroz.com/episode/connecting-mind-body-and-soul?video_id=2732874928001#comments

To leave sjogrens comment...Thanks Sharon.
Title: Re: Thank you Dr Oz and Venus!
Post by: frizzy0206 on October 18, 2013, 05:43:03 PM
Dr oz doesn't impress me either...and me Williams should be much more vocal..you know who is??JULIAN LENNON..Google him
Title: Re: Thank you Dr Oz and Venus!
Post by: A66eyroad on October 21, 2013, 06:04:53 AM
Gosh, Frizz, I did Google him but I didn't see anything that knocked me over. What is it about Julian that he's vocal about?

Title: Re: Thank you Dr Oz and Venus!
Post by: Dee on October 21, 2013, 08:31:29 AM
Lupus.
Title: Re: Thank you Dr Oz and Venus!
Post by: KS123 on October 24, 2013, 02:06:06 PM

There is a comment section on his site.
I left one with links.  So far it is the only one on Sjogrens...come on folks spread the word. Write a comment.

Venus, is still young and a "commodity" she will promote her product lines and positive "I can do" attitude. She has a fitness journal on her "Elleven" site. I am not sure, I think she will be making health videos, etc.

Who would buy videos from someone on the decline? Progressive, no cure path?

I was happy that she pointedly stated: that she did not have dry eyes and mouth as her primary symptoms and that it took her 7 years to get a Dx, Oz seemed taken aback...even with the 6 month follow ups.
Guess Oz could not pick up on that as it countered his dummied down cartoon sketch.

The prior segment on Mind/Body was good. We are influenced by our the environment we create.
  I figured she didn't have dry eyes or mouth-or sun sensitivity--cause there would be no way to play tennis..how can you have sjogrens though without the dryness? i thought that was what the illness was named after-the swedish doc who saw patients with dry eyes and also had dry mouth?
Title: Re: Thank you Dr Oz and Venus!
Post by: KS123 on October 24, 2013, 02:13:24 PM
I am with you Velcro - we need a spokesperson who will tell the whole ugly truth about sjogrens and not sugar coat it.  As far as Dr. Oz is concerned - sounds like he has never treated anyone with sjogrens before so he should not speak about it. 

Although I think it is great that sjogrens is receiving more publicity it needs to be the whole truth of what it could be and what it can do not just how well a celebrity seems to be doing after being diagnosed.
  I agree with you and Velcro.. When it first came out she had it I felt so bad for her but also felt this new hope!  I thought for sure she would really speak out about it and be a pioneer-raise $$ for , etc.. and give it a name so people would know how to pronounce it and would know what it was without having to explain-"it's a sister illness of lupus, dryness, sun sensitivity, fatigue, muscle aches, R/A. "...  It gets old

Like With parkinsons which my dear aunt has-Michael J. Fox has been so open and upfront and bold.. He has really helped the cause--maybe not for his lifetime but for those in 20 or 30 years who first get diagnosed or maybe better treatment even for him. I don't know...  I like that he is "the voice" for it.. He is not too proud ... I wish Venus would follow suit--but since she is in the beginning stages she may never be.. and it may not progress too much for her-but i still wish she would see the seriousness of it and help others..

sorry for my tirade.. can you gals/guys tell i have the stupid Chicago flu going around?? sorry!  just feeling lousy on top of my usual!!! it took me 3 days to figure out it wasnt a flare but the flu!  i am sure you can all relate..