>----- Original Message -----
From: "Nancy" <anonymous@msn.com>
To: "Multiple recipients of list ADHESIONS"
<adhesions@mail.medispecialty.com>
Sent: Thursday, May 22, 2003 7:18 PM
Subject: Re: My letter to a Senator to ask his assistance...A NEW APPROACH?
> Helen:
>
> I have been visiting this web site for the last few months and I have
> been comforted by the fact that there are others that suffer like I do.
> I've had five surgeries (the last was a total abdominal hysterectomy)
> and I know the adhesions are back. The symptoms are better than before
> the hysterectomy, but I know that I am not done with the adhesions or
> surgeries.
>
> So many of us are told that another surgery will help for a while, but
> will end up being futile because adhesions always reform. It is clear
> from reading this board that there are doctors in the world that
> recognize this condition and have worked to develop techniques and
> materials to treat it. I do not understand why the FDA is holding up
> approval on SprayGel and other adhesion prevention materials. I've read
> that they cite an increased risk of infection. Well I can tell you that
> I would take that risk. Infections can be treated with antibiotics,
> adhesions have no other treatment. If doctors are having good luck in
> other countries with SprayGel and other techniques, like the gasless
> laparoscopy, then why isn't the U.S. medical establishment grasping at
> these options? I suspect that no one knows the true scope of this
> disease. A lot of us have stumbled upon this site and read with great
> interest that we were not alone. Maybe a survey can be incorporated
> into this site that allows us to identify ourselves and our afflictions.
> Doctors should also be surveyed. They see the symptoms every day. They
> should call this disease what it is... ARD, not IBS or chronic
> abdominal pain. It should be clearly identified in medical school and
> it should be no mystery what causes the symptoms. If a patient develops
> pain or bowel trouble shortly after a surgery, then a diagnosis of ARD
> should become the Gold Standard. Once we know who "we" are, we can
> submit petitions to our states. We can also put numbers to the disease
> and work for it to gain recognition throughout the government. The FDA
> should rush potential treatments through the approval process. It may
> take a while for a perfect treatment to be devised, but some of us will
> find at least some relief in the meantime. This has to be better than
> the current system. GI doctors don't recognize it because it is outside
> of the digestive system. OB/GYN doctors help somewhat, but as the
> problem grows it leaves the scope of their expertise. I would imagine
> that they do not want to deal with GI issues.
>
> Conventional wisdom would tell us that we are exceptions-that there
> aren't enough sufferers to justify a specialty. Well, I don't believe
> that this is the case, but I cannot back my belief up with data. How
> many of us are there? Maybe it's time we tried to find out. We can
> start with the visitors to this web site. Maybe we can get some women's
> magazines to publish a public service announcement directing other
> sufferers to this site. I know that I would willingly sign my name to
> that type of survey. It seems that this will be the only way to gain
> credibility.
>
> Thanks for letting me vent a little. It's hard to live with an
> unsolvable problme.
>
> Nancy, Michigan
>
> At Wed, 21 May 2003, Helen Dynda wrote:
> >
> >Dear Senator Sams,
> >My name is Helen Dynda; and I am seeking your assistance in
creating/preparing a state assembly petition for the state of Minnesota -
regarding the urgent need for increased awareness about Adhesions Related
Disorder (ARD).
> >
> >I am one of the founding members of the International Adhesions Society
(IAS) - an Internet-based support and educational website for victims of
ARD. The Home page of the IAS is found at:(http://www.adhesions.org).
> >
> >I became the unsuspecting victim of ARD as the result of a laparotomy in
1970. It wasn't until May 1997 - 27 years later - that I finally found a
doctor, who validated my pain!! He told me a diagnostic laparoscopy is the
only way to know for sure if adhesions or endometriosis were the cause of my
constant pain. I agreed to have a diagnostic laparoscopy; and on August 1,
1997 I learned for the very first time that adhesions had been the *real
cause* of my suffering!!
> >
> >When the surgeon performed my diagnostic laparoscopy, he was faced with a
very complex surgical problem! He had to perform an adhesiolysis first -
before he could perform a diagnostic laparoscopy! Massive adhesions had
literally adhesed my omentum to my abdominal wall - involving an area of
about 7inches by 4 inches. These two surfaces were literally fused
together!! I had a very short reprieve from adhesion-caused pain; because
on the tenth day after this surgery, the adhesions and the pain of adhesions
returned!!
> >
> >The formation of adhesions is a completely natural/normal response by the
human body. Adhesions result as the human body attempts to heal and protect
itself following a surgery, trauma or infection.
> >
> >Since I had never heard of adhesions, I realized I needed to learn more
about adhesions; so I checked our Mayo Clinic Family Health Book; but
adhesions was not even listed!! So in October 1997 we signed up to be on
the Internet. That's when I was determined to learn as much as I could
about adhesions.
> >
> >In June 1998 I entered my story at the Healthseek Forum - and in October
1998 I was stunned to see my story on several of the Internet Search
Engines!! Since I didn't know how to have it removed, I decided to use this
opportunity to tell the world about adhesions - and that's what literally
happened!! Since then I have received and responded to more than a thousand
emails from adhesion-sufferer from the United States and many other
countries around the world!! ARD is not unique to the United States -
because it is a world-wide problem!!
> >
> >As a very active member of the IAS, I have made it my mission to
encourage victims of ARD to learn as much as they can about ARD. The IAS
Message Board is a testament to the problems that ARD causes. The IAS
Message Board is found at: (http://www.adhesions.org/forums/message.htm) .
> >
> >As of today, May 21, 2003 the Adhesions Quilt represents 4,906 Years of
suffering among 696 people (mostly women) before their adhesions diagnosis.
This averages out to 7 years of suffering before these people are correctly
diagnosed as having adhesions!! I hope you will take a look at the stories
on the Adhesions Quilt is at:
(http://www.obgyn.net./cfm/adhesionsdisplay.cfm).
> >
> >For 27 years I had been mis-diagnosed by many, many doctors - including
many doctors at the world-famed Mayo Clinic (5 times between 1970 and 1997).
For 27 years I had been labelled as being a "hypochondriac" - and treated as
being mentally ill with "severe psychoneurosis". I actually saw these
diagnostic terms in my medical records from the Mayo Clinic.
> >
> >Since the only way to confirm the presence of adhesions is via a
diagnostic laparoscopy. I had never been offered this procedure before the
diagnostic laparoscopy I had in August 1997!! Based on my experience, this
helps to explain why I had been incorrectly diagnosed by so many doctors!!
This also helps to explain how urgent it is for the state of Minnesota - and
eventually the government of the United States - to create awareness about
adhesion related disorder.
> >
> >I thank God for being there for me as I searched for a diagnosis I could
believe and accept. I have shared a very brief account of my ARD experience
with you. Unknown to the adhesion-sufferer - and I wasn't aware of this -
is the fact that ARD also affects relationships!! In my case - my husband
and four children have also been the unsuspecting victims of ARD. The pain
of ARD prevented me from being the mother and partner I wanted to be.
Instead, I found my husband and children doing for me what I really wanted
to be able to do myself - but was not able to.
> >
> >In May 2001 one of our IAS members, went to Washington, D.C. to meet with
government officials from her state to ask for their help in doing what they
could to create awareness of Adhesion Related Disorder. She was told that
each state in the United States needs to create/draft a petition - a
petition that will be recognized as a legitimate state document - a document
that can be submitted to the legislature of the state, where the
adhesion-sufferer resides.
> >
> >Adhesion-sufferers from Louisiana, New York and Wisconsin have already
accomplished this. You can view all three documents at
(http://www.adhesions.org/gov_recognition.htm).
> >
> >I was interviewed by a reporter for the article, "Painful Bonds", which
appeared in the October 18, 2002 issue of the Echo Press (Alexandria, MN).
As I had requested, the reporter kept the focus of her article on adhesions
related disorder. To find this interview: Enter the following
website(http://www.adhesions.org/whatsnew.htm). Scroll down and click:
"Painful Bonds, an interview with ARD patient Helen Dynda".
> >
> >Currently, ARD is not recognized by managed care and government insurance
as being either a disease or disorder; consequently, when surgeons perform
very difficult, time-consuming and risky adhesiolysis procedures, surgeons
are reimbursed by insurances at the lowest rate. Unless surgeons are fairly
reimbursed for their work, it's the ARD patients who suffer the
consequences - the return of adhesions...with a vengeance...and increased
adhesion-related pain.
> >
> >Thank you for taking your valuable time to read my plea for your help in
creating awareness about ARD. If you need more information, I have much
more information about ARD issues that I'm willing to discuss with you - at
your convenience and at a place convenient for you. I look forward to
hearing from you. Thank you!!
> >
> >Sincerely Yours,
> >
> >--
> >Helen M. Dynda
> >
>