Oprah And Dr. Oz

[Broken_Shell]

Hello,

I would like to send a letter to Oprah and Dr. Oz asking them to use their shows to help raise awareness about dysautonomia. I will let you know if I get any response.

For the creators DINET, do I have permission to include a link to your site in my letter?

Thank you!

~ Broken_Shell

[Steph06]

Great idea!! I love Dr. Oz. Please let me know if you get a response.

Steph06

[smiles]

That would be great. More people need to know about dysautonomia.

Smiles

[worththewords]

My mom was telling me about Dr. Oz's new show and that it was much better than she thought it was going to be. I may buy and send a documentary to his show when they come out.

[Maxine]

Many people have written Oprah, and Dr. OZ on POTS/Dysautonomia, and also EDS. So far no response.

It seems like a sort of shallow situation in entertainment media, it that the subject needs to grab the attention of the public by some kind of freakish nature.

EDS did make it to ABCs Primetime, but the focus was on a man who could stretch his chest skin over his face, and fold himself into a box. They focused 15 minutes on him, and 2 minutes on a young man in a wheel chair in Detroit, and another 2---possibly 3 minutes on Dr. Nazli McDonnell from NIH.

There's wasn't much focus on the disabling and life altering symptoms, or the fact that EDS can kill someone.

Dr. McDonnell wrote a letter to ABC, but I never found out if there was a response.

Maxine :0)

[ssparksnj]

I have written to both myself as well with no response. But maybe if enough people write in they may consider it. It usually takes someone famous to be affected before the media takes notice. My neice has a rare disease called Neiman Pick and for years their organization tried raising awaresness. Then, unfortunately a famous retired football player's granddaughter was born with the disease and the media was all over it. Sad that it happens that way.

[Michelle Sawicki]

Sure, you can send a link to our site.

For anyone reading this, if you have questions for me in the future please send them to staff@dinet.org. I just don't have the time to read all the forum posts anymore, and there is a good chance I will miss your question if you post it here.

Thanks,

Michelle

[chipper]

I think about this everyday!! Hope you can get it done!! Dr. Grubb with Doctor Oz!! Somebody will get through. There is a new book, by Lynn Fox Adams, that would make a big impact.

[Maxine]

Sorry I'm not more optimistic on this, but I've seen so many people try. I guess it can't hurt to continue. I guess it's like hitting the lottery, and maybe someone will get this. It has not been a good week at all, actually a few bad weeks----------------------soooooooo, my attitude stinks, reeeeeeeelllllllllyyyyyy bad.

Good luck with all that .................... I hope someone gets through-------perhaps adding the link to this site WILL work,,,, .

You would think the pharmaceutical industry would help sponsor us get SOMETHING out there. After all we DO give them a lot of business considering that most of our symptom control is by prescription drugs.----

I can't help but wonder if this same conversation will be going on in 20 years.

I had some really disturbing news one day. I found out that a couple of nurses thought people with POTS were actually mentally disturbed, and not really having any TRUE physical symptoms. This is by someone who worked with them. THESE nurses should know better. If the medical profession doesn't have our back, it's going to be more diffiuclt to get awareness out there in any form. I think we still need to work on getting the seriousness of this disorder knocked into the heads of some of these medical professionals first. One cardiologist actually told me, "there's no money in it", so no one wants to deal with it. And the doctors that DO deal with it are disrespected by thier peers, and sometimes even thought of as a little mentally disturbed themselves. How sad is that............

Maxine :0)