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
>