Q & A with The Simon Foundation for Continence

The Simon Foundation for Continence is currently celebrating its 30th anniversary. They have kicked off their year-long celebration with the release of the book Managing Life with Incontinence. Founded in 1983, the Simon Foundation for Continence has made it their mission to bring the topic of incontinence (loss of bladder or bowel control) out into the open.

The Simon Foundation's President and Founder, Cheryle B. Gartley, was the first person with incontinence to speak publicly about loss of bladder control. She has promoted continence with keynote speeches and interviews on prime-time television. The Urology Care Foundation was delighted to speak with her about her efforts and the Simon Foundation's upcoming projects.

Question: How did you make the transition from patient to the founder of an international advocacy group?

Answer: Before I answer, I need to set the stage for what life was like prior to the way we address continence issues today. I refer to that time as the "Dark Ages." Back then, you would never see television ads about absorbent products or even medications. You would never see articles in popular magazines about the topic or even be able to find common continence products in your local grocery store. In fact, the term ‘Overactive Bladder' did not even exist. Amongst that atmosphere, I was in graduate school getting my MBA when I suddenly started having severe urinary tract infections (UTIs) leading to a loss of bladder control.

My life became controlled by my condition-I started shopping at night to avoid long lines, stopped participating in the activities I enjoyed, and I even started avoiding my friends. One day, a friend asked me if he had done something wrong, because he noticed I was avoiding him. That was when I had what I call the "aha" moment. Then I found myself telling him the truth. Being supportive, my friend used humor to make me feel better. He suggested connecting a portable toilet to my horse so we could resume horseback riding. Then, putting all jokes aside, he gave me a valuable piece of information-NASA was about to send the first female astronaut into space. We wondered what continence support NASA might be planning for her. I called NASA and spoke with Dr. Doris Ralph, a technology transfer specialist, who was not at all surprised by my call. During our conversation, I asked her, "Why doesn't someone do something about this issue?" To which she asked, "Why don't you?" And that began my career.

Q: Simon is celebrating its 30th anniversary. What are you doing to celebrate this milestone?

A: The launch of this year's festivities featured the release of our new book, Managing Life with Incontinence. This book is unique in that it features sections from both patients and health care professionals. There are chapters written by various experts on how incontinence affects body image, product and practical management. There is even a whole chapter on life coaching and how guiding life- coaching principles can apply to someone with incontinence. Between each chapter is a personal testimony from different people around the world sharing stories about how incontinence has impacted their lives. We hope the readers walk away inspired by these stories and empowered by the experts' advice.

We are also about to host our biannual conference: Innovating for Continence: The Engineering Challenge. What makes this conference different is that people who have had or are currently experiencing continence problems address the audience about how their needs are being met and the gaps that remain. We also invite speakers and attendees not traditionally thought to be experts in the continence world who have technological expertise that could potentially influence the future development of new tools or support for someone living with incontinence. For example, we invited a speaker to lecture on the topic of odor. Research has found that as you age, your ability to smell is lessened. Often, people are terrified that there is a smell associated with their bodies due to incontinence. I have met and interviewed people living in very nice eldercare facilities who do not socialize or participate in activities because they are afraid they smell. Speakers addressing this issue can help us understand the gaps in care. This shows us where industry, biotechnology companies and/or manufacturers can produce tools that can alleviate the problem. Our goal in bringing these experts together is to foster collaboration to develop better products and services that can help people living with incontinence.

Q: What information do you want individuals living with incontinence to have before they see their health care professionals about their condition?

A: To prepare for your appointment, bring a list of issues you would like your health care professional to address. Be aware that some problems may take longer than one visit to resolve. However, it is important to make sure that you and your health care professional are on the same page and will continue to work together on whatever ailments are bothering you. It is important to know that while you may not have control of the condition itself, you can control how you work to solve the problem.

Q: What is the final message you want to leave with the readers?

A: The last message I have for your readers is to help the Simon Foundation accomplish its mission of removing the stigma of incontinence. Most people have heard parents, friends and family members tell a child who is in the process of bladder and bowel training that they are a good or bad girl based on whether they had or did not have an accident. We would like every reader to help change that dialogue. It isn't about whether you are good or bad. It is about knowing that you are putting forth the effort to get your bladder or bowels to understand what you want them to do regardless of the outcome.