Simon says.

I'm always impressed when an individual or organization is pioneering a path for others to follow--if they are the original, the premier to embark or create or produce a product or service that fills a need in society, especially if that need is labeled as a social taboo. The Simon Foundation for Continence is one such group. Founded in 1983 by Cheryle Gartley, the first person dealing with incontinence to speak about it publicly, the Simon Foundation's mission is to "bring the topic of incontinence out of the closet, remove the stigma surrounding it, and provide help and hope to people with incontinence, their families, and the healthcare professionals who provide their care." The foundation is supported by both an Advisory Board and a Governing Board of Directors, consisting of a multitude of professionals, many of whom have dedicated their careers and research to the treatment and advancement of medical technologies for incontinence.

As with any organization that is on an incredible mission, you would expect an incredible individual to be at its head. Cheryle Gartley does not disappoint. Cheryle Gartley had the insight to become aware of the need in society to open up the door of incontinence that was heavily barricaded by social stigma. She did this by being the first person to publicly speak about her own experience dealing with incontinence. In 1983, when the Simon Foundation was founded, there was virtually no awareness in society regarding incontinence--no books on the shelves, no magazine ads, no products available at your local pharmacy, not even any articles in medical journals and certainly not any television ads for medications, products, and procedures offering assistance. Thankfully, 25 years later, things have changed. Any local drug store has a section with products for bladder management; you can read extensively about bowel and bladder issues in a variety of medical journals; and one can now see ads on television for products such as adult diapers and various prescription medications that help stop bladder leakage. Much, if not all, of this public awareness is due to the advocacy and perseverance of the Simon Foundation.

Incontinence does not discriminate; it affects men and women of every race, religion, and social standing with over 200 million people worldwide currently living with incontinence. The cost of it in the U.S. alone is 16.3 billion dollars per year. One of the biggest goals of the Simon Foundation is to communicate to individuals with incontinence and their families the importance of diagnosis since incontinence is a sign that something else is happening inside your body, causing the incontinence. In most cases, the symptom of incontinence is not an indication of a serious underlying medical condition. It can easily be caused by the natural changes in the body due to aging like loss of muscle tone and strength in women or the enlargement of the prostate gland in men. However, incontinence can be a warning sign of a serious and life-threatening condition that can grow worse the longer it's left undetected. The Simon Foundation stresses talking to your doctor so that an accurate determination of the cause of incontinence can be identified.

A second motivation for diagnosis is that with proper treatment, incontinence may be cured! For example, urinary tract infections can cause a bladder to leak and may be easily treated with antibiotics. An overactive bladder (OAB) may be easily corrected with prescription medication, which stops the bladder spasms that cause leaking. The sooner treatment is begun, the easier it is to treat.

It's not difficult to think of countless emotional issues and scenarios a person of any age dealing with incontinence may face. The Simon Foundation's Web site (www.simonfoundation.org) relates individual experiences of people living with incontinence. A story submitted by a 40-year-old man struck me as particularly poignant. He is challenged with adult nocturnal enuresis, the medical term for bedwetting. After trying medications, alarms to wake him up, and various other methods that did not work, he began to wear adult diapers as a young teenager. Although he only had to wear them at night, he was teased cruelly and told that diapers are for babies. An excerpt from his story gives insight:

"Why is it that diapers are considered acceptable for the elderly, special needs children, or people with disorders...[like] Alzheimer's disease but are not acceptable for older children and adults that wet the bed? This to me seems totally illogical--after all, enuresis is a disease also, and like any disease, it should be managed ...Diapers and plastic pants, in my opinion, should be viewed no different than wheelchairs, crutches, sanitary napkins for women, eyeglasses, or braces for the teeth ... "

This individual, like Cheryle Gartley, chose to to break through a societal perception by voicing an opinion and a personal experience. Breaking social stigmas in our world is accomplished in just this way.

For those in need of information or support regarding incontinence, the Simon Foundation Web site is a wealth of knowledge. In addition, the Simon Foundation relies heavily on public donations to generate updated educational materials, Web site maintenance, and advocacy for people with incontinence. You can also read more about Cheryle Gartley's incredible accomplishments, awards, and continued achievements as the Simon Foundation's President. Get involved, become aware, and be a part of the pioneering path that has opened the door of incontinence.

Amy E. Alexander, an EP contributing editor, currently lives in Upstate New York, next door to the horse farm on which she was raised. She's enjoyed living all over the country but has to say there is no place like home! Over the last few years, she's begun inspirational speaking, which she truly enjoys, and also wrote her first memoir last year entitled, Life At Breakneck Speed. If you'd like to read more about Amy and her non-profit foundation, check out her Web site at www.Spinaltimes.org.