On Sun, Mar 1, 2009 at 5:42 PM, LOU COOPER <louc829@gmail.com> 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 >> >