Re: Barrier Business Opportunities

From: Eggers, Ellen (EEggers@csuchico.edu)
Thu Mar 5 10:26:40 2009


I'm not sure if you mean me; my name is Ellen. I'm afraid you've misunderstood my message. I HAVE written--to editors, agents, magazines, etc. Dr. Wiseman and I spent years doing that to no avail. He and I also partially wrote a book; one publisher showed a little interest, but ultimately rejected it when she realized how few sufferers there were (in the grand scheme of medical conditions) and how under diagnosed the problem is. I recommend that it is not enough to merely mention Dr. Wiseman's name. I know from experience that he must be involved with any publicity project or we lay people are ignored.

Ellen

________________________________

From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]

--
________________________________
On Behalf Of D. Tigoudar
	Sent: Thursday, March 05, 2009 8:38 AM
	To: Multiple recipients of list ADHESIONS
	Subject: Re: Barrier Business Opportunities
	
Ive treid myself contacting talk shows such as Oprah and  the View, now
that there is the new Doctors show we may have a chance of getting our
condition out there. Linda if you a professional writer write them about
us. If you cannot let me know and I will, I had the barrier put in and
the adhesions grew through it.
Tammie

--- On Wed, 3/4/09, Ellen Eggers <eeggers@csuchico.edu> wrote:

From: Ellen Eggers <eeggers@csuchico.edu> Subject: Re: Barrier Business Opportunities To: "Multiple recipients of list ADHESIONS" <adhesions@mail.obgyn.net> Date: Wednesday, March 4, 2009, 4:10 PM About a month ago (as well as last year), I made a suggestion to contact Dr. David Wiseman, the founder of this organization, regarding publicity. He has been working for years to get the public and the medical community to understand adhesion disorders. He and I worked for several years, trying to get magazines and television shows to recognize and report on the disorder; we also wrote a proposal and several chapters of a book on the subject. One thing was very clear: NO ONE would listen to just me, regardless of the fact that I was a published writer, a victim of the disorder, and offered some solutions. NO ONE would listen to a lay person; they all wanted the backing of a professional in the field. That professional is Dr. Wiseman. I keep making this same suggestion, trying to help people to avoid "reinventing the wheel." Why not build on a foundation that is already there? Why not use the resources that we have? It's still a long shot, but at least it's one possible way to get people to listen. And an organization already exists: this one! On 3/4/09 11:17 AM, "Donna Johansen" <donnajohansen@telus.net> wrote: > > Hi Jules, > That sounds great. I was thinking the logo could look

something > like a band of stretching material..??? I am not an artist but > just a thought. > > Also, what about a society, organization, > NOARD = "North-American Organization for ARD" > > This could be set up in both Canada and the US. Purpose? To > advance the awareness, research, and solution of ARD. > Something like that....any ideas? > Donna J > > -----Original Message----- > From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On > Behalf Of dutcherj > Sent: Tuesday, March 03, 2009 4:40 PM > To: Multiple recipients of list ADHESIONS > Subject: Re: Barrier Business Opportunities > > Hi, > this last year I researched the ribbon colors. I found

burgandy > to be the colors for adhesion awareness. I made a necklace and > earring set. I was shocked to see so many ribbon colors for so > many causes. > Jules > > At Sun, 1 Mar 2009, LOU COOPER wrote: >> >> Hi >> This a adhesion problem is to hidden, maybe we should have a logo > or >> something like that, the breast cancer has a pink ribbon, > remember not >> so long ago, cancer was in the cupboard and look now, because > people >> went out their to make it known, fundraise------adhesion day, get > the >> quilt----walk for adhesion's, so on, and so no, I am sure there > are >> lots of idea that we all can come up with. I think we should have > a big >> RED RUBBER BAND!!!!!!!!! >> Lou >> >> On Sun, Mar 1, 2009 at 5:02 PM, jetstamp <jetstamp@yahoo.com> > wrote: >>> At Sun, 1 Mar 2009, Mark in Seattle wrote: >>>> >>>> Joan wrote: >>>> something administered by >>>>> mouth or even direct injection into the problem areas- like > they do >>>>> with Botox for tight muscles, for example. >>>>> >>>>> Joan >>>>> >>>> I'd like to be invited to a convention where I can see people > >>>> talking about the problem. I want to know that we are

being >>>> represented. I want to know that this person has good

access > to all >>>> the research. Instead, I've read at least 2 articles

with > authors >>>> who say that adhesion-related disorders are

under-represented. > I'd like it if doctors were more accountable. >>>> Writing >>>> letters is the best thing I know to do. That and new

patient >>>> education here on the forum. Information is the key to > success. >>>> >>>> Yours, >>>> >>>> -- >>>> Mark in Seattle >>> >>> Bravo, Mark! Information, AND public awareness and

education. > I have >>> been doing what I can to try and spread the word about > adhesions- >>> like many others on here, I have tried Oprah and Dr. Oz on > more than >>> one occasion (although the number of words they allow you to > use is >>> very insufficient to give the whole picture). Also CNN

where > you can >>> 'ask the doctor', various other networks although finding a > place to >>> suggest a story does not always seem to be available unless you > want >>> to use the 'contact us' route which I'm never

comfortable with > for some reason. >>> Also check your local TV news stations to see if they allow you > to >>> suggest topics. >>> >>> Also, you can write to your state representatives online very > easily. >>> It is hard to do though as they say shorter emails are more > likely to >>> be read and of course adhesion horror stories are often not > short and >>> sweet, but you just say what you can. >>> >>> Also, other online support groups like the IBSgroup.org- a few > people >>> other than myself talk about adhesions if you go back far > enough- >>> plus there are some on there with so-called IBS (IMHO, an > extremely >>> overused term which conveniently enables docs to deny

patients >>> appropriate investigation and subsequent treatment for what are > >>> probably treatable conditions) that clearly sound as though > adhesions >>> could be a possible issue but they, just like me for a

couple > of >>> decades, had no clue. >>> >>> Also, I recently submitted my story to the IFFGD (a site for >>> functional GI issues) under what they call 'courageous

stories' > but >>> it hasn't been posted and I have not heard from them. >>> >>> Also, I just joined the ratemds.com site which enables you to > look up >>> doctor ratings and leave feedback. I have a post called 'how > to >>> search for an adhesion doc' which prompted questions from other > users >>> who were not familiar with the condition. >>> >>> I brought up one of the big problems with this issue- since it > is >>> such a hush-hush condition, when you try to search for a > physician >>> based on your condition, the word 'adhesions' is not a > searchable >>> condition- you can't really go by body part alone because they > often >>> affect several areas in the same person. As I said, I was > bounced >>> back and forth for years from gyno to gastro, always being told > by >>> each to 'go back to the other'. >>> >>> I also mentioned that when users would leave feedback on a > physician, >>> it would help if they would say what the doctor treated them > for, >>> because if it is for a complicated issue like adhesions, I need > to >>> know. If it is for a broken arm, it doesn't help me much. >>> >>> The first thing that needs to be done is to get this issue out > in the >>> public arena- get it out from under the rug! This would > increase >>> pressure to treat this condition as more than a mere > 'inconvenience'. >>> >>> PUBLICITY PUBLICITY PUBLICITY!!!!!!!!!!!!!!! >>>> >>> Joan >>> > > http://www.adhesions.org/forums/listcmds.htm >

http://www.adhesions.org/forums/listcmds.htm http://www.adhesions.org/forums/listcmds.htm


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