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