Oprah - Let's Get Cd On Her Show

[zippy]

While we're at it, what about People Magazine, 20/20 with perhaps John Stossel exposing the hidden sources of wheat and difficulties of gluten sensitive individuals, Ladies Home Journal, Prevention, the Today Show, and so on.  If enough things get thrown out there, some are bound to stick.

<{POST_SNAPBACK}>

That is an excellent idea, and probably a much better chance of it actually happening.

[Kailynsmom]

Count me in too...sounds like fun

[floridanative]

Everyone is coming up with such great ideas! I think any and all publicity is good for us. I love John Sossel's style so I'm going to e-mail him too. Can't you just hear him now - it takes on average 11 years to get diagnosed with Celiac Disease in the Us - give me a break!.... Excellent!

[fisharefriendsnotfood]

AMAZING idea! I'm sending her an email through the website right now.

-Jackie

P.S. - I will be SO excited if they do a show about it. I hope some of us can fly to Chicago to be on the show!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[jerseyangel]

Well, my name starts with D so I just E-mailed Oprah. Hope it helps! Maybe its an omen, but as I E-mailed her show, Oprah is on "The Insider". I'm hearing her voice as I write this

[mytummyhurts]

I'm sorry, I'm not trying to be a downer. But I just wanted to point out that Oprah's show probably gets tons of e-mails from people with any type of disorder, disease or cause and I don't think that a show entirely about celiac disease would hold the average person's interest for very long. I do think that it would fit well into a show covering a wider range of food/health related topics.

[Nantzie]

I agree with Abby, but hopefully there are enough other people writing in about their years of un/misdiagnosed health issues that maybe they'll do a show about - The Disease You Never Knew You Had. Because it's really amazing how much bad health people can get used to and feel as if it's completely normal. There have to be other people/diseases out there that people have been suffering with as mis or undiagnosed for decades.

Can you guys even imagine how much good a 5-minute partial mini-segment between comercials would do for thousands of people? I could just see the jaws drop and the light-bulbs go off for SO, SO many people if this ever happened.

Sigh....

Nancy

[fisharefriendsnotfood]

Maybe if they used a title like, "Over 3 million Americans have it... two million don't know" or something like that, it would get people's attention.

-Jackie

[angel-jd1]

My group USASillyYaks did a letter writing campaign and we wrote to several shows. Oprah was one of them. We did not have any luck getting anything on her show, and even at that time they were searching for people with odd disorders. Celiac is pretty odd! Ha

We got Clan Thompson on board, they put out information in their news letter and had a pretty big campaign. We stil had no luck. (here is the thread from our letter writing campaign : Open Original Shared Link )

I think we really need to think of a different approach besides flooding them with e-mails and letters. I know that we (celiac.com board members) have had at least 3 tries of huge letter writing to get on oprah. Anyone have any other approaches that we can try out?? I would LOVE to see us be successful with this!! Just a thought.

-Jessica

[Guest CD_Surviver]

Just wanted to post something about numbers for people who are sending e-mails i have been doing alot of research for my paper and found out that 1 in every 22 people in the US have celiac disease but have never been diagnosed which means that over 13 million people in the US alone have celiac disease. anyone who is sending e-mails can use this it came form a reliable soure online. count me in my last name starts with a j so just let me know when i send an e-mail. i would be happy to e-mail all that i have found out about celiac disease and what i have gone throught all 16 years of my life and what my brother and mom go through.

[Rachel--24]

Just wanted to post something about numbers for people who are sending e-mails i have been doing alot of research for my paper and found out that 1 in every 22 people in the US have celiac disease but have never been diagnosed which means that over 13 million people in the US alone have celiac disease.

<{POST_SNAPBACK}>

1 out of 22?? Where did you read that...I thought it was 1 out of 133 people have celiac disease??

[Guest CD_Surviver]

1 out of 22?? Where did you read that...I thought it was 1 out of 133 people have celiac disease?? 

<{POST_SNAPBACK}>

1 out of 133 is dx'd and 1 out of 22 is people who have it but have not never been diagnosed. i got it from a science journal. b/c of the research that i am doing for my biology paper.

Lauren

[Survivor]

1 out of 133 is dx'd and 1 out of 22 is people who have it but have not never been diagnosed. i got it from a science journal. b/c of the research that i am doing for my biology paper.

Lauren

<{POST_SNAPBACK}>

Isn't it 1 in 4000 or 5000 of the people who are celiacs who are diagnosed?

Isn't 1 in 133 an estimate from somewher of the number of people in America who would be diagnosed with our illness if everybody knew how to get tested and all of the doctors knew what problems are part of celiac?

I am confused now.

Where did you get the 1 in 22 number?

[Rachel--24]

Isn't it 1 in 4000 or 5000 of the people who are celiacs who are diagnosed? 

Isn't 1 in 133 an estimate from somewher of the number of people in America who would be diagnosed with our illness if everybody knew how to get tested and all of the doctors knew what problems are part of celiac?

I am confused now.

Where did you get the 1 in 22 number?

<{POST_SNAPBACK}>

Yes...1 in 133 is an estimate of those who have celiac disease diagnosed or not. Most of these people are not diagnosed so the number of diagnosed celiacs is probably much higher. Maybe you are right Survivor 1 in 4 or 5 thousand. Maybe 1 in 22 are gluten sensitive but not actually Celiac. I dont know where those numbers came from but I think they are innaccurate.

[celiac3270]

Yes. Approximately 1 in 5000 are currently diagnosed. They used to think that that was also the prevalence rate. Most recent studies have shown that an estimated 1 in 133 have celiac. That said, the rate more than doubles in those exhibiting celiac symptoms (about 1 in 55). And first degree relatives of celiacs have that approximately 1 in 20 prevalence of developing celiac. That's probably where you got the 1 in 22 number.

[floridanative]

This is the week for 'B' peolpe to e-mail Oprah. If your last name begins with a B, then it's your week. I agree that this campaign may be futile but it doesn't cost us money or much time to persue it.

Other and better ideas are greatly appreciated. I just can't focus on anything else right now. It's my busy season and I'm late even posting this today. In Jan. I'll have time to help with anyone else's ideas to get the word out.

I agree that a show topic of 'diseases you never know you had' would be a great show for Oprah and celiac disease could just be one of the conditions. Maybe some of you could mention that as an idea.

Good luck to us all and have a great week!!!

[jenvan]

Go here to see stats from the Univ of Chicago. They use 1 in 22 in a different manner. Anywho, think these show probably the most reliable stats I know of...

Open Original Shared Link

[jerseyangel]

Wow--great info. thanks!

[Jnkmnky]

How about everybody get 19 friends and family members together, call your local news channel, get them to do a segment on celiac disease.... While being interviewed, everyone wear t-shirts/sweatshirts that say, "Oprah, do a show on celiac disease!" Explain to the interviewer that 1-133 have this disease and so few know about it. That your ultimate hope is to get Oprah to do a show on celiac disease. BTW>> local news stations are always looking for something like this. It's easy to get on, you just have to make the effort so that it's easy for the news channel. ANYWAY... tape the show, send OPRAH a copy. Call it a "CAMPAIGN TO REACH MILLIONS". Also send a copy to CNN's Sanjay Gupta *the medical guy* and ask him to assist in your "CAMPAIGN TO REACH MILLIONS". Someone start a blog called "CAMPAIGN TO REACH MILLIONS". and all of us pop in there and send links to friends. I think the email idea is weak. Oprah pays minimum wage salaries to folks to scan her million emails a day. You need to be more pro-active than passive. Emails to a woman who receives a staggering volume a day is not the way to go. Visual is more likely to be successful. MO.

This idea covers multiple areas of the country *different newchannels from around the U.S., demographics *will see your support in the friends who participate*, Calls Oprah to task * her name on Shirts*, enlists a large news organization *CNN*, a medical professional *Sanjay Gupta*, and puts a friendly face on a serious disease *yours*.

[Jnkmnky]

Open Original Shared Link

this guy may hear you before oprah does.

[jerseyangel]

Thanks for the link--I sent an e-mail off to him.

[laurelfla]

wow...

Jnkmnky i think you are totally onto something. is this something y'all would be willing to do??

when i first found out i had celiac disease i wanted to get the word out so that other people could get answers to their problems; i could think of several people that should definitely be tested. but along the way i got self-absorbed and quit worrying about that part of the disease, the publicity part.

my sister just got her biopsy results back and she had villous atrophy, and a guy at my support group went undiagnosed 15 years and developed all kinds of other problems. it's stories like that that make me want to hit the streets and let people know!!

[judy05]

wow...

Jnkmnky i think you are totally onto something. is this something y'all would be willing to do??

when i first found out i had celiac disease i wanted to get the word out so that other people could get answers to their problems; i could think of several people that should definitely be tested. but along the way i got self-absorbed and quit worrying about that part of the disease, the publicity part.

my sister just got her biopsy results back and she had villous atrophy, and a guy at my support group went undiagnosed 15 years and developed all kinds of other problems. it's stories like that that make me want to hit the streets and let people know!!

<{POST_SNAPBACK}>

I just sent an email to Dr Sonjay Gupta on CNN. He has a medical call in/write in and I asked him to help us get the information out.

[JKJ]

Hi. I just posted this link on the other thread about this:

Open Original Shared Link

It's the page on Oprah's site for e-mailing the producers.

Gina

<{POST_SNAPBACK}>

I've posted it in my "Favorites"! Getting ready for J week

Let's do it!

JKJ

[floridanative]

Sorry this note is late. Today is week C for those of you interested in participating in the Oprah e-mail compaign. If your last name begins with a C, please e-mail Oprah this week.

I think CNN would also be a good avenue for us to try per the post above. Any publicity is good plublicity in my view. Good luck and happy turkey day to everyone!