Re: Barrier Business Opportunities

From: jetstamp (jetstamp@yahoo.com)
Sun Mar 1 15:01:33 2009


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


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