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
>>