On 3/4/09 11:17 AM, "Donna Johansen" <donnajohansen@telus.net> wrote:
>
> Hi Jules,
> That sounds great. I was thinking the logo could look something
> like a band of stretching material..??? I am not an artist but
> just a thought.
>
> 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
>>>
>