Thank you so very much for putting into words what some of us are unable to do. It is people like you that help our illness in a way that I wish I could. Good luck and my thoughts and prayers are with you and your support.
Lynn
>My following letter to the editor appeared in the local newspaper in
>Ames, Iowa, today. I don't have a scanner, but I can send a copy by
>snail mail if anyone wants one. Marilyn
>
>Dear Editor:
>
>National Invisible Chronic Illness Awareness Week, Sept. 23-29, seeks
>to bring attention to diseases that aren’t visible to the naked eye. The
>week is being sponsored by Rest Ministries, founded in 1997 by
>33-year-old Lisa Copen of San Diego who has rheumatoid arthritis and
>fibromyalgia.
>
>Those two diseases are well known and accepted by medical professionals
>and the public as legitimate illnesses. However, I have Adhesion
>Related Disorder (ARD), a condition that has attracted little media
>attention. Few non-medical people know about this disease caused by
>adhesions—scar tissue—formed from surgeries unless they suffer from it
>themselves.
>
>Although adhesions are a natural byproduct of surgery, and not all
>create problems, this nasty scar tissue can attach to other tissues and
>organs, entrapping nerve endings and sending pain signals to the brain.
>Adhesions can even obstruct the bowels. The only sure way that a doctor
>can determine if someone has adhesions is to perform a laparoscopy,
>commonly called belly button surgery, in the short stay unit of a
>hospital.
>
>Surgeons can cut pre-existing adhesions or place a barrier to prevent
>them from forming in the first place. But these techniques don’t work
>well because adhesions typically re-form in a matter of days, and the
>few barriers on the market in this country haven’t been successful.
>Surgeons in Europe and Australia are using the new Confluent SprayGel™
>approved for use there, and the initial results look promising. The FDA
>is testing the gel in clinical trials at a few places in the United
>States, but not anywhere near Ames or the Midwest.
>
>Unfortunately, I’m not alone in having experienced the agonizing pain
>brought on by ARD. Of the estimated 9 million American women with
>chronic pelvic pain, many undergo multiple surgeries in the hopes of
>getting some relief. (Women are ARD’s primary victims because we
>undergo frequent surgery for gynecological disorders.) The catch-22 is
>that subsequent surgery results in either re-formed or new adhesions.
>
>As the Iowa representative for the International Adhesions Society, I am
>in contact with women—both in Iowa and across the nation—who are
>disabled from this disease. Each day I read stories posted on the ARD
>web site (http://www.adhesions.org) that are truly nightmarish, cries of
>desperation from women bedridden by pain who aren’t receiving adequate
>pain treatment. On the site’s “Adhesions Quilt,” 558 people have told
>their stories and chronicled their nearly 4,000 collective years of
>suffering. Often these women document surgeries numbering in the double
>digits. A few have traveled as far as Germany for surgery with the new
>adhesion-preventing gel. I’m blessed because I have received help
>controlling my pain from a compassionate and informed doctor who
>specializes in pain management here in my hometown.
>
>For more information about Adhesion Related Disorder, access the ARD web
>site, which was developed in cooperation with OBGYN.net, an on-line
>resource center for physicians and the women they serve. The
>International Adhesions Society not only provides a support and
>information network on the Internet for sufferers but also has been
>proactive in bringing attention to our plight. Due to volunteers’
>efforts and IAS’s backing, the legislatures of Wisconsin and New York
>passed resolutions urging increased awareness of ARD in their 2001
>sessions. I’m hopeful that a similar measure will be passed in Iowa.
>Public attention will be a big step toward ensuring that those of us
>with Adhesion Related Disorder receive the relief from pain that should
>be a basic human right, and spurring the government and the medical
>profession to provide a solution.
>
>--
>Marilyn Vaughan
>
-- A new friend