misstraci Posted January 13, 2012 Report Share Posted January 13, 2012 So, I was reading (only partially because I can't seem to focus) Naomi's post about "Why are doctors like this" and it got me to revisiting the idea of getting our illness out there and bringing attention to it. I think someone posted awhile back about emailing 'the doctors' show or Dr. Oz. I would LOVE LOVE LOVE if they would devote a show or segment to dysautonomia and get some people who really know their stuff to talk about it and get some awareness, maybe some answers for some people, etc etc.Has anyone for real ever emailed these kinds of shows with the idea of putting us on there?! Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 13, 2012 Report Share Posted January 13, 2012 That's a great idea. I've seen dr oz talk about cfs but I don't think he included pots or dysautonomiaand to me, this is what makes my life so challenging. I'd want to make sure he understoodpeople with other illnesses can have this too. Lymies get this .. Hopefully someone here will know how to go about this .. Tc .. D Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Report Share Posted January 13, 2012 If you wont to get some significant support for this idea try getting the yellow wiggle (Greg page) onboard as he has a large profile.Greg Page helped me out a lot. Not because I ever met him or anything like that but in Australia EVERYONE knows about Greg Page and his illness and how badly he was effected. So I just always say Ive got the same thing as the Yellow Wiggle and people go 'oh ok, that was pretty bad.'ive always noticed that if I talk to a GP about POTs and Ankylosing Spondylitis they always say 'poor thing' and 'that must be so terrible' about AS and dismiss POTS as being much milder. But I always make them know that AS is nothing compraed to POTS. LOL Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 13, 2012 Report Share Posted January 13, 2012 We are doing this! Contacting a bunch of media and creating a POTS awareness week. Have let DINET know about it, its in the planning stages, and we hope to get the word out to the public and doctors. I feel especially bad for the teenagers going through what I went through (and still am) and it needs to stop. I and some of the other folks involved have media connections and are using them! Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted January 13, 2012 Report Share Posted January 13, 2012 Funny, about 2 months ago I had gone on to Dr. Oz's website and requested they do a show on dysautonomia. It was actually my husband's idea. It was right after my daughter got diagnosed. I think we need to increase awareness, it took a few years to finally get a diagnosis because no one knows about it. I have a friend that is a pediatric neurosurgeon and he had never heard about it. amazes me. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 I just e-mailed Life Extension magazine asking them to do an article for us and gave them a whole lot of info on us. Funny, how all of us are on the warpath to gettting this out there. Maybe our concentrated efforts will pay off.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 13, 2012 Report Share Posted January 13, 2012 A group on facebook did this - got like 100 people (some large number) to write to Dr. Oz and asked to do a show on POTS. As far as I know, there was no response. But maybe there are other avenues? Quote Link to comment Share on other sites More sharing options...
GingerA Posted January 13, 2012 Report Share Posted January 13, 2012 If you wont to get some significant support for this idea try getting the yellow wiggle (Greg page) onboard as he has a large profile.Greg Page helped me out a lot. Not because I ever met him or anything like that but in Australia EVERYONE knows about Greg Page and his illness and how badly he was effected. So I just always say Ive got the same thing as the Yellow Wiggle and people go 'oh ok, that was pretty bad.'ive always noticed that if I talk to a GP about POTs and Ankylosing Spondylitis they always say 'poor thing' and 'that must be so terrible' about AS and dismiss POTS as being much milder. But I always make them know that AS is nothing compraed to POTS. LOLI wonder how you would contact him for something like that. He has helped people that I used to work with understand me too because I worked in childcare. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 13, 2012 Report Share Posted January 13, 2012 Awesome! I would love to see POTS awareness and have it on TV. In addtion to Dr Oz, there is also that show The Doctors. Dr Oz is a leading cardiologist so i'd bet he has at least heard of POTS. It's great that some of you have media connections. I think that is what it will take. Otherwise, TV producers just care about ratings/advertising. Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 13, 2012 Author Report Share Posted January 13, 2012 yay you guys are all so awesome!Claire..... that is neat. I'm glad you have connections and have already started on your own mission with something like this.Rama.... good idea, but I've never heard of yellow wiggle..... what/who is that?thanks everyone else, this would be awesome to see dysautonomia in the news, tv, media, whatever, just some attention, some dr's attention and all that. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 Just got notice back from Life Extension that my request has been forwarded to the Scientific Research department and they will be in touch about whether or not they will follow up with an article. They are going to look further into my request. Yayyyyyy!!!!Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 13, 2012 Report Share Posted January 13, 2012 I actually saw a show on POTS on "Mystery Diagnosis" after being diagnosed, that is;...it was good. There are some books about it, and I know someone is trying to have a movie made, too. I do post things on occasion on my FB page. My ENT did a thesis on Autonomic Vertigo, and he is the one who sent me to the Autonomic Disorder Doctor and a Neurologist. I'm wondering if somehow we could get the doctor's to have a symposium about it for the medical community, as well. That would be very helpful. Quote Link to comment Share on other sites More sharing options...
chipper Posted January 13, 2012 Report Share Posted January 13, 2012 Great idea! I just got off of his site and begged a little. It will take all of us for him to pay attention, or someone with influence. Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 13, 2012 Author Report Share Posted January 13, 2012 issie...... that's awesome!!! let us know what you hear back Quote Link to comment Share on other sites More sharing options...
yogini Posted January 14, 2012 Report Share Posted January 14, 2012 Yes, it was on Mystery Diagnosis, Dr House and in the Wasington Post and NY Times. Usually it's based on just one person's perspective, which doesn't necessarily represent us well as a group. That will be one of the big challenges - getting the "right" kind of publicity. Quote Link to comment Share on other sites More sharing options...
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