An Effective Response to the Impact of Health Stigma Is Within Our Reach

We’re experiencing a renaissance of civil rights in this country. A woman has run for President of the United States on a major party ticket. People can marry whomever they choose. The country is caught up in a retelling of the story of our founding fathers – in a hip-hop musical written by a Latino and featuring a colorblind cast.

Major shifts indeed. And we plan to ignite yet another – for people of every age, gender, and life situation. For people who have difficulty walking, seeing, hearing, or comprehending the world around them, and millions more who cope with health conditions, seen and unseen, that redefine their life options. Disability and other health challenges have many causes – from accident, to disease, to genetic chance. The result is often a daily test of individual resolve and strength. But along with these solitary struggles, there is one common to all: stigma.Continue reading→

Incontinence and Shame

“At the height of laughter, the universe is flung into a kaleidoscope of new possibilities.” – Jean Houston

Incontinence and Shame, Submitted by – Lianna

Introduction

I don’t remember the first time I felt shame for my incontinence, but I remember the last time. It was just over a year ago. I had been laughing at something a coworker said, though I can’t recall what it was that I thought was so funny. That’s when it happens, you see, only when the force of the humor is so strong that I am completely overtaken with gut-bursting laughter, doubled over, my body curving in on itself as if it were trying to hold on to something invisible, some last tether to solidity, while everything else in me isContinue reading→

Focus Group Opportunity in the Chicagoland Area

If urinary incontinence is affecting your life, please help The Simon Foundation for Continence understand your challenges and give your input to help design a new program we are creating. The study focus groups are 90-minutes long and will take place in June 2019. Current locations are: Evanston, Chicago and Forest Park, Illinois.Continue reading→

NorthShore’s Revolutionary Adult Diaper is Designed to Reduce Stigma Surrounding Heavy Incontinence

Over 80 million adults in the U.S. manage some level of urinary or bowel incontinence, and many millions more will be faced with leaks and loss of control later in life. The good news is many of these symptoms are treatable or can be managed using incontinence pads bought in stores. But what if that isn’t enough? For people who have heavy incontinence and need stronger, more absorbent products than those found in stores, their options have been limited to clinical hospital-like briefs. Until now. Earlier this year, NorthShore Care Supply, a Buffalo Grove Illinois-based company founded to empower those with heavy bladder or bowel leakage, unveiled its popular SupremeLite™ absorbent brief, now in vibrant shades of blue, green and purple. Read more.

Source: Newswire.com., April 23, 2019

Free Interactive Education Program Announced for Those Living With an Overactive Bladder

According to the American Urological Association, approximately 40% of women and 30% of men live with overactive bladder or OAB. Many people with OAB find it difficult to talk to their doctor or loved ones about their condition because of the stigma associated with it. Pro-ficiency, a leading provider of interactive online patient education tools, announces its collaboration with the Academy for Continued Healthcare Learning (ACHL) and the Simon Foundation for Continence, in their joint, interactive program, to educate people about how to speak with their healthcare providers and their loved ones to get the care they need. The program also discusses treatment options, how to manage social and lifestyle considerations, and incorporating shared-decision making into visits with health care providers. The program is freely available to all participants. “ACHL & Pro-ficiency previously collaborated on a highly successful OAB educational activity, however, given the depth and breadth of OAB, it was clear that continued education was needed. ACHL is proud to continue the education movement with this most recent program,” adds Amanda Kaczerski, with ACHL. Read more.

Source: Newswire, November 5, 2018

Nearly Half of Women Over 50 Experience Incontinence, but Most Haven’t Talked to a Doctor

Nearly half of women over 50 say they sometimes leak urine — a problem that can range from a minor nuisance to a major issue — according to a new national poll. Of more than 1,000 women between the ages of 50 and 80 who answered the poll, 43 percent of women in their 50s and early 60s said they had experienced urinary incontinence, as had 51 percent of those age 65 and over. Yet two-thirds of these women hadn’t talked to a doctor about the sometimes embarrassing, little-discussed issue. And only 38 percent said they do exercises that can strengthen the muscles that can help keep urine in. The poll shows they’re finding ways of coping on their own – from using pads or special underwear to wearing dark clothing and limiting fluid intake. Read more.

Source: MHealth Lab, OCtober 31, 2018

Time to Tackle ‘Taboo’ Over Continence Issues, Warn Charities

The 10 charities, including Alzheimer’s Society, Age UK, Marie Curie, warned that the taboo around the topic forces those affected to struggle in silence and more research is needed. As a result, the organisations held a workshop where common problems and solutions for incontinence issues were discussed by patients, carers, researchers and clinicians. Others involved include Parkinson’s UK, Guts UK, the Urology Foundation, Devices for Dignity, the National Institute for Health Research, and the James Lind Alliance. A report based on the meeting – titled My bladder and bowel own my life and published today – recommends tackling the stigma and funding research into the issue. Read more.

Source: Nursing Times, August 22, 2018

Technology for Incontinence Hasn’t Developed That Much Since Ancient Egyptian Times

Today’s healthcare is full of technology that would seem like science fiction to our grandparents. But this is far from true in every area: some remain woefully neglected by innovation. Hop in a time machine back to ancient Egypt and you would find recognisable examples of the absorbent pads and catheters which are still a mainstay in the management of incontinence today. The earliest known reference to an absorbent pad dates from 4th-century Egypt: the female scientist Hypatia is recorded as having thrown her menstrual rag at a student to ward off his infatuation with her. The pad remained a homemade “product” for many centuries until the 19th century, when manufactured versions of reuseable “antiseptic cotton for absorbing discharges” could be purchased from pharmacies. Disposable pads, first produced by Kotex in 1920, were in widespread use by the late 1930s. Since then, the only major innovation in their design has been the introduction of super absorbent polymers in the 1980s, which have dramatically improved absorbency. Read more.

Source: The Conversation, July 30, 2018

Finding Freedom and Eliminating Stigma

My Story – Submitted by: Waldo

This story was originally published in the Danish magazine Vertel. You can access the original story and photos here: https://www.medireva.nl/wp-content/uploads/MEDIREVA-Vertel-lente-versie.pdf

Here is the author’s English translation, which he has asked that we share with you.

Dear reader,
I would like to share my personal story with you. I want to contribute to the elimination of the stigma and the taboo around incontinence. Continue reading→

Incontinence Affects More Than 200m People Worldwide, So Why Isn’t More Being Done to Find a Cure?

For a chronic health condition that causes shame and misery for countless people and costs billions, urinary incontinence keeps a low profile. Media reports about chronic health conditions appear with alarming regularity, but it is rare to read about the debilitating impact of the involuntary leakage of urine. Nevertheless, urinary incontinence is a condition which, next to Alzheimer’s or strokes, is reported as most negatively affecting “health-related quality of life”. The reasons for this are not too hard to fathom. Urinary incontinence, of course, elicits some embarrassment. And there also seems to be a feeling this is a low priority condition: urinary incontinence does not directly bear up against the terrible impacts of life threatening conditions and illnesses. Read more.

Source: The Conversation, February 14, 2018