Looking back, Twila Yednock thinks she suffered from urge incontinence since she was a teenager. But it was only when fate got involved that she realized she wasn’t alone.
Twila, Director of Special Events at The Simon Foundation for Continence, was running a successful florist business when her best friend died of breast cancer. They were both 44.
“I had an epiphany, really. I just thought ‘oh my gosh, I work seven days a week, but I could be dead next year.’ I sold the business,” she explained.
One of her regular customers, Founder and President of the Foundation, Cheryl Gartley, suggested she volunteer for the Foundation — and the rest is history.
“It was only when I started doing work for the Foundation that I realized I had had this problem since I was a teenager to some degree. Cheryl didn’t know about it when she asked me to volunteer, but it was not long until I told her. It was really hard to get past the stigma and open up, but once I had, it was an amazing breakthrough,” said Twila.
Smashing the stigma
The stigma attached to incontinence is a deep rooted one. So much so, in fact, that Twila even had problems telling her husband and best friends when her urge incontinence worsened about 15 years ago.
“If I had been able to ask for help it would have made such a big difference, I would have been more in control.”
But now that she has found her voice, she is committed to helping others find theirs. She said she had seen an improvement in people’s understanding of incontinence since she started working with the Foundation.
“The stigma has lessened considerably, though people still struggle,” said Twila, who has played a key role in initiatives such as the Foundation’s Rude2Respect campaign and the Innovating for Continence Conference Series.
“The more visible it becomes, and when people can see that other people are in the same situation, the better it will be,” she said.
The Foundation also wants to facilitate solutions, which is where the Innovating for Continence Conferences come in. Held every three years, the events bring together people with incontinence, medical professionals and engineers.
It stimulates innovation by allowing engineers to hear directly from those living with the problems that need solving.
The brainchild of University College London’s Professor Alan Cottenden, the meeting is a perfect example of patient-centered development.
“We are now starting to see ideas and research coming through that could address a lot of unmet needs.” said Twila, who as well as helping with the organization of the conferences has taken part in the event’s patient panel.
“You can be perfectly open because we are all there for the same reason: to figure out what we can do to help. The engineers in the audience can listen to the issues and think what they have in their knowledge base that could help.”
Looking to the future, Twila, who considers herself “one of the lucky ones,” said she wanted to spread the work of the Foundation and continue to break the taboo on talking about incontinence.