Life Without Leaks
Life Without Leaks
Introducing We Count, NAFC's ambitious new campaign to help women with incontinence
Did you realize that half of all women will experience incontinence? Or that more people have incontinence than either diabetes or heart disease? As alarming as those figures are, incontinence is still something that too few people are willing to talk about, and the end result is that millions suffer in silence - often for years and years - even though there are treatments that can work wonders for them.
That's why NAFC is introducing the We Count campaign. We start with the facts and figures around incontinence to help women recognize that they’re not alone; then we go beyond the numbers to show that no matter what they’re going through, there’s a wide, welcoming community of providers and caregivers and fellow patients out there ready to help them overcome it all.
Our goal? To motivate women to speak up, reach out to their healthcare providers and learn all about today’s treatment options. Get started today by visiting our campaign page, where you can find a wealth of information and download a free discussion guide to make it easier than ever to start the conversation with you doctor:
To learn more about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram, Twitter and Pinterest.
Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/
Incontinence products are a necessity, but they can cost hundreds of dollars per month. That's why we’re partnering with Aeroflow Urology. They provide free, medical-grade continence supplies through eligible insurance. Plus, they'll send your supplies right to your doorstep with their discreet, monthly deliveries. To see if you or a loved one qualifies, visit aeroflowurology.com/NAFC.
The following transcript was generated electronically. Please let us know if you see any transcribing errors and we'll get them corrected immediately.
Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America's leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers, all available at NAFC.org.
Welcome back to another episode of Life Without Leaks. I'm your host, Bruce Kassover, and joining us as always is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome, Sarah.
Sarah Jenkins: Hi Bruce. Great to be here!
Bruce Kassover: Excellent. Joining us today is another member of the National Association for Continence. It's Holly Kupetis. Holly, how are you doing?
Holly Kupetis: I’m great. Thanks Bruce.
Yeah. For those who are not familiar with Holly, she's the Marketing Director and she and Sarah have both been involved with the organization for, it's got to be about 10 years now, isn't it?
Sarah Jenkins: Yeah. Over 10 years.
Bruce Kassover: And in that time, you, you guys have come to really understand enormous amount about, you know, not just incontinence conditions in general, but also what it takes to reach people and to really communicate to people in a way that generates action and motivates results. I think that's a fair thing to say, wouldn't you?
Sarah Jenkins: Absolutely. Yeah. We're, we're all about pushing people towards having that important discussion with their doctor.
Bruce Kassover: Excellent. And to that end, that's what we're going to be talking about today because the NAFC is really about to be starting a campaign that's built around the idea of educating women about what treatments are available and really getting them to take action, to learn about the treatments and to go and seek out professional help from healthcare providers. Is that right?
Sarah Jenkins: That's correct, yes. So we are starting a new campaign starting in March. It's called We Count. The whole goal is to increase awareness about incontinence among women. You know, over 80 million US women are affected by incontinence, so it's a really prevalent issue that isn't talked about very much.
So we really want to raise light around that issue and get people talking about it. Show people that this affects a lot of women, and that there are treatments available. They just have to talk to their doctor.
Bruce Kassover: I love the name, the ‘We Count’ name. It sounds like there's sort of a play on words going on there also. I mean, what's the, what's the whole genesis of that?
Sarah Jenkins: So, you know, we've seen through research that women are really disproportionately impacted by incontinence due to different things like pregnancy, childbirth, menopause, and as we age, the prevalence also increases. It affects about 75% of women over the age of 65.
But as, as much as it affects women, it's really underdiagnosed and is really rarely discussed. So we wanted to find a way to highlight those stats around incontinence to show women just how common it is, the many different ways that it can affect a person's life and educate them on the different treatments that exist. So We Count not only highlights these facts, but it also really is kind of a double meaning.
It serves as a reminder that we as women count and the condition really deserves to be treated. You know, women often put themselves last when it comes to taking care of themselves, especially with incontinence. It's something that they generally will brush off. It's not a big deal, or they think it's normal or just a little bit of leaking. “I can deal with it…” But , there are so many treatments that are available to manage the leaks. There's no reason to deal with this condition on an ongoing basis.
Bruce Kassover: And that's something that I think that both you and Holly, you know, have, you bring a perspective as a women and as a woman-led organization. You know, you're both parents of younger children and you know, so you have sort of a personal perspective on this that, you know, certainly somebody like me would never be able to bring to the issue because you really are focused on specifically women's concerns with this campaign. Is that right?
Holly Kupetis: Yes. And just to add to that, Bruce. As you said, you know, I've been working at NAFC for a while now, and we talk about this stuff, but yet it feels like no one else is, and it's sort of this taboo secret thing because our moms didn't talk to us about it, and our doctors aren't talking to us about it, but yet we're all affected by it.
Bruce Kassover: Yes. When you said that we're all affected by it, what are some of the numbers behind this When we talk about the statistics, you know, just how common is it?
Sarah Jenkins: It's very common, especially in women. It affects almost 80 million women in the us. In fact, one in two women have incontinence, so you probably know someone who has it if you don't have it…
Bruce Kassover: That’s an insane number, right? Every other woman that you meet has – or will have – incontinence issues. That's, that's, it's like mind boggling.
Sarah Jenkins: It's really insane, and the fact that we don't hear anything about it is even crazier.
Holly Kupetis: Yeah. And to add to that, I think it's a surprising statistic to learn that incontinence is more common than diabetes and heart disease combined.
But yet, as Sarah said, we just don't get the attention, or it doesn't get the attention that it deserves. So I think this campaign to really bring awareness to this is really critical for women.
Bruce Kassover: I wonder if part of that is because I think people take incontinence as if it's sort of a personal failing that's somehow a mark on themselves in a way that other conditions aren't. Is that your experience that you see people feel that way?
Sarah Jenkins: I think so, yeah, I think it, it feels like something that they think they should be able to control. You know, sometimes incontinence is associated with a condition that a child might have. So there's a little bit of that element that you're an adult, this, this is something that you feel you should be able to control. But the reality is a lot of people can't, and it is really widespread in many, many women across the US.
And you know, there's a lot of misconceptions. A lot of people think that it happens only to older adults, but the reality is it can happen to anyone. And half of the people who have incontinence are actually under 50. So it's really a widespread condition that affects a wide range of ages wide.
Bruce Kassover: So what are you going to be doing with this campaign? What are, what are the particular elements that the target audience might be seeing?
Sarah Jenkins: Our goal is to shed light on the stats around incontinence. So each month we're going to be sharing facts about a specific aspect of incontinence. That may be about incontinence and how it affects mental health, or the prevalence of incontinence, or a specific type of incontinence.
Even stats about incontinence during different life stages, such as pregnancy or menopause. And our goal is really to highlight these facts, to help encourage women to have a discussion with their doctor. You know, most women wait about six-and-a-half years between the time they first start noticing symptoms before talking to a doctor, and we want to shorten that gap. We don't want women to, to live with these leaks. There are things that they can do to treat their condition.
Bruce Kassover: I want to ask you about that six and a half years, because, first of all, that's, that just sounds terrible that you have a condition and you're living with, living with it for years and years before you seek help for it.
Is that because symptoms get worse and worse and it just sort-of reaches a point where you can't take it anymore, no matter what? Or is that because it's just so embarrassing for so many people that they just will refuse to discuss it? Or is it some combination of the two?
Sarah Jenkins: I think it's a combination of the two. You know, there's definitely a big stigma around incontinence. Women are embarrassed about having this condition. We've done surveys with our own audience and we see that there's a really deep shame associated with incontinence. No one wants to admit that they have a leaky bladder. And the fact is that as bladder leaks worsen, women tend to shrink their life to fit around that.
You know, they avoid social situations, they limit time with friends and family. Their work may suffer. They may stop working out, so you know, their physical health may be impacted. And they're constantly worried about having an accident in public.
You know, the, the stigma around incontinence is really real, so I think that that prevents people from talking about it. And then, you're right, as time goes on, leaks only get worse. There typically will come a point where the patient just can't take it anymore. They need help from their doctor.
Bruce Kassover: And it, it sounds like, from, from what you're saying is that the emotional side of things is, is just as bad, if not worse.
Sarah Jenkins: Yeah, a lot of people suffer from shame, embarrassment depression has been associated with incontinence. So, you know, all of these different quality of life issues are affected and it can really affect a patient's mental state.
Holly Kupetis: Yeah, I just wanted to add to that piece of it. I think that often what happens is, as Sarah said, it gets worse over time, but as many women do.
You don't prioritize this issue and you sort of keep chugging along, but it gets worse and before you know it, you are, or women, many women are changing the way they go about their day. They're bringing extra clothes or they're not staying too long at events or they're not traveling far distances. And this is what's heartbreaking, but yet what is most critical for us in this mission is to really try to help encourage women to talk to their doctor.
That it doesn't have to be that way, to not let it go so long to where, you know, there's suffering, as we say in silence.
Bruce Kassover: I really do love that this is a woman-focused effort because even though we do talk to women and about women and for women a lot with the National Association for Continence’s other materials, I think that that this time you're going to be doing things with a little bit more of a focus on women's empowerment. Does that sound right?
Sarah Jenkins: Absolutely. Yeah. We, we really want women to know that this is a very common condition and that doctors are used to talking about it and treating it. You know, it can be scary to bring up, but they really need to just be rest assured that their doctor has heard the discussion before.
You need to let your doctor know that you're leaking and that it's impacting your life. And if you have a good doctor, they'll listen to your concerns and help you find a treatment that works for you. And if your doctor brushes you off, it's probably time to find a new doctor. That unfortunately does happen sometimes. But don't let that discourage you. Seek out someone who's going to be willing to help you. because there are a lot of doctors out there that take this very seriously and will address your concerns.
Bruce Kassover: Yeah. You know, that's funny because that's another stumbling block. If somebody finds that they need to look for a different healthcare provider, that's just another obstacle in the path. And you know that that's another conversation that people may not be all that willing or comfortable to have as well. But that's because, I think, tell me if I'm crazy here… a lot of people don't realize that the results that they can achieve with the treatments that are out there today are remarkable and far better than they, they've ever imagined. Certainly far better than they've been, even, you know, 10 or 15 years ago.
Sarah Jenkins: There are so many treatments available these days. And it can really range from something as simple as diet and exercise to medication… some patients have even been treated with Botox… there’s sacral nerve stimulation, which is a more minimally of invasive procedure… and then of course, surgery can also be an option if you have a very severe case of incontinence where other treatments haven't worked.
So it's really important that even if you try a treatment and it doesn't work to not give up because there's other treatments out there, and you may just not have found the one that's right for you yet.
Bruce Kassover: Yeah, this really is sort of like, you know, the, the knee bone’s connected to the shin bone type thing where, you know what you, if you try something that's muscular and a muscular-focused therapy doesn't work, there's nerve therapy, there's medication, there's just so many different ways that this issue can be approached and there's a really good chance that there's something out there that's just right for you.
Sarah Jenkins: Absolutely.
Bruce Kassover: So tell me if this is, if this is incorrect, but the goal is sort-of twofold. It's not just to get women to go out and speak with their physicians and to feel confident that they can actually have this conversation, but to get the word out as far and wide as possible to reach as many women as we can to get them to take these social posts that we're putting out there and other messages and to share them as well. Is that fair to say?
Sarah Jenkins: Absolutely. Yeah. We want to really get this conversation going in the same way that menopause is. You know, more people have started talking about menopause recently, and that's great because for a long time nobody was talking about it. And women in the same way, they suffer with incontinence, which, by the way, can also be a symptom of menopause.
They were suffering for a long time with menopause symptoms and not sharing it with anybody or talking about it. And now it's great to see so many more people are outspoken about that condition and really trying to push the needle in terms of urging women to seek help. So we want to do the same with incontinence.
We think it's a condition that deserves to be talked about. It's not something that should just be left untreated or brushed under the rug. You know, if it's impacting you and your life in any way, there are treatments out there that can help. So we want to raise awareness and we want to push women towards those treatments.
Bruce Kassover: Now Holly, as the marketing director, I think that that one of the things that you're going to be leading the charge in is getting the message out and all of the different ways that people can learn about the We Count campaign. So what are some of the different ways that people are going to be able to, to see elements and learn more about the whole f.
Holly Kupetis: Yeah, as I think you mentioned Bruce, we are going to have a social media campaign where every month we're going to be sharing key statistics in infographic visuals on our social media channels. So Facebook, Instagram, LinkedIn, and X or Twitter, and so people can follow along to learn a little bit more.
And then for those that are learning about those statistics, we're encouraging women to check out our dedicated campaign page for We Count where we will have more information and tools and downloads for them and tips for speaking up and talking to their doctor.
Bruce Kassover: I love that. That's really great that we're going to hit them in a lot of different ways and really give everybody lots of different opportunities to learn more and to share more and help spread the word.
So, Sarah, if I'm listening to this podcast, I'm already familiar with the National Association For Continence, so there's a pretty good chance I'll see some of these materials out there, but if I want to learn more right now, what do I do?
Sarah Jenkins: You can visit our website at NAFC.org. We have a plethora of information on our website about all the different types of incontinence – there's not just one, there are many – and then all of the different treatment options that exist for those. So it's a really great place to get education about the condition.
And if you go specifically to our campaign page, which is nafc.org/we-count, you can download a doctor discussion guide that can help you have that important discussion with your doctor.
Bruce Kassover: And how much does that cost?
Sarah Jenkins: It's free. Everything is free.
Bruce Kassover: Yes. That's great. I always like to make sure that we emphasize everything is free. So yes, definitely take advantage of it now. So that brings me to my next question, which is one that you're very, very familiar with because you know that at the end of every podcast we like to ask our guests if they have one hint or tip or bit of advice for people to live a life without leaks. So, Sarah, today I'm asking you, what is your bit of advice?
Sarah Jenkins: I think my best advice would be to not wait, you know, don't put off treatment because you think it's not a big deal, or you think it's normal or you think it's going to go away. It often won't, and in most cases it can get worse. So the longer you wait to seek treatment, the worse your condition can get – and you're spending all of this time living with a condition that you don't necessarily have to live with.
You know, women who speak up do find that they have more treatment options and often have better outcomes than those who wait until problems are too severe to ignore. The sooner you seek treatment, the sooner you can find relief from the leaks and get back to living your life on your own terms.
Bruce Kassover: I think that’s sage advice indeed. So with that being said, Sarah, I want to thank you very much for all of your insight, and Holly, I want to thank you for everything that you’re doing to help get the word out and educate women about why it's important that they act now. So, so thank you both for joining us today.
Sarah and Holly: Thank you, Bruce.
Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin MacLeod and can be found online at incompetech.com. More information about NAFC is available online at NAFC.org.