Re: Barrier Business Opportunities

From: LOU COOPER (louc829@gmail.com)
Sun Mar 1 16:31:58 2009


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
>>
>

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