Re: My letter to a Senator to ask his assistance in creating a state document urging awareness about ARD...

From: Sue (compstar@bright.net)
Wed May 21 22:09:55 2003


Wonderful letter, please let us know if you hear back ANYTHING... and I will see if anyone has something going for Ohio....I may not be able to write it, but I could add to it, and add my signature. I think every STATE can find SOMEONE to write like Helen did!

I have to wonder with all the Reps, at least one or two HAVE to be married to a lady with endo.. or had surgury and has adhesions! slowly.. the word is speading...

I told 2 more people just today..that never heard of adhesions!

A big Hand for Helen, and the others that got that letter written!

--
Sue R from Ohio

> ----- Original Message ----- From: Helen Dynda To: Multiple recipients of list ADHESIONS Sent: Wednesday, May 21, 2003 7:53 PM Subject: My letter to a Senator to ask his assistance in creating a state document urging awareness about ARD...

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


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