How One Young Woman Turned Incontinence Into Innovation

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: What if the solution to your biggest challenge didn’t exist, so you have to invent it yourself? Well, in this episode, you’ll meet Bella Duarte-Crespo, whose journey from childhood incontinence to entrepreneur and patient advocate is a powerful reminder that determination can turn even life’s toughest obstacles into opportunities.

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 of the National Association for Continence. Welcome, Sarah. 

Sarah Jenkins: Thanks so much, Bruce. 

Bruce Kassover: Yeah, I’m excited. Today is gonna be a real treat because we have a guest who does not really fit the profile of our typical guest.

Today, we are gonna be talking with a young woman named Bella Duarte Crespo, and she is a student, she’s an entrepreneur, and a patient advocate. Right now she’s at the University of Notre Dame. She just finished her first year, but she has some really interesting things to tell us about life with incontinence and how you can overcome some of those challenges. So Bella, welcome. Thank you for joining us.

Bella Duarte-Crespo: Thank you very much, Bruce. I’m happy to be here.

Bruce Kassover: Yeah, we are too, because, it’s not often that we get to speak to a young person about the sorts of issues that we are talking about normally on this podcast. So maybe first of all, you just want to tell us a little bit about who you are and how you got to be where you are today.

Bella Duarte-Crespo: Thank you very much. Yeah, I’d love to introduce myself. I’m Bella Duarte-Crespo, as you mentioned. And I was born with spina bifida meningocele, which is basically a birth defect of the spine, and pretty much it affects all my muscles from the waist down, including my bladders, my bowels, and my legs.

As a result, there’s a lot of symptoms I’ve had to manage growing up, and because of that, there have been a lot of different challenges having to navigate school, friendships, all that stuff. But especially when I was younger, we found it was very difficult to manage my incontinence. And when my mom and I were looking on the market trying to find something that would be a solution that I could use at school when I had accidents, we were surprised we couldn’t find anything on the market, and that’s when we decided to create our own solution to the problem.

And we started with prototyping, testing out different types of pockets, maybe in my underwear, in my school uniform, anything really that I could use to carry a catheter, my medical supplies, and that would make changing very easy if I ever had an accident on the go. And after many years of prototyping and testing, we finally came up with My Private Pocket, which is an underwear with pockets inside of it where you can carry your medical supplies.

And then if you have an accident, what you can do is you can roll up the underwear into one of those pockets, and it becomes a waterproof little pouch. That way you could walk out of the bathroom and nobody knows that you have an accident. And that product is my baby. It’s what started my whole journey into entrepreneurship and business.

I launched Hidden Innovations in Disguise, which is my business, in 2019, and from there we launched that first project, the My Private Pocket. And after that, we explored more and even deepened more of our scope into disability advocacy, made a bunch of different new products, and it’s what’s been helping me in terms of my medical journey.

It’s helped a lot with my confidence. And it helped me discover my passion really early on in life. So I’m pretty fortunate to know what I like doing. 

Bruce Kassover: It’s so nice to hear how positive you are about everything. A lot of people probably have heard the term spina bifida but may not really be familiar with what it is in great… First of all, how common is the condition? 

Bella Duarte-Crespo: It’s not incredibly common. It’s definitely a rare type of condition. I’d say it’s about one in a million. But it’s also definitely not one of extremely rare diseases where you have absolutely no resources. I’m very fortunate that there’s a great community. We’ve been in contact a bit with the Spina Bifida Association. And it’s just the type of deformity or disability that affects a lot of different facets and can be very different for people, depending on the severity, their age.

Even myself growing up, my symptoms and my ability to do things has changed all throughout my younger years and has finally settled out now that I’m becoming an adult. But spina bifida has been a great way for me to meet so many wonderful, different people and open myself up to a lot of different perspectives, because while I’ve been able to meet a lot of people with spina bifida I’m always fascinated to find out how different their experience is from mine, despite us having the same disability. 

Bruce Kassover: That’s really an interesting and a refreshing perspective. But it’s got to be particularly hard on a young person. How did you navigate that, especially when you were younger and as you were growing up and maintain this sort of positive attitude that we see? 

Bella Duarte-Crespo: I wasn’t always having a positive attitude about it. When I was really young, it was especially difficult for me. It was very embarrassing. I was very dedicated to hiding it from my peers, especially at school. And it made things very difficult in terms of some friendships. Luckily my real friends are always very understanding of me and love me regardless of my disability or my condition.

But when I was younger, it was very difficult having to explain it to my peers when unfortunately it manifested in ways that I didn’t want it to. And even separate to incontinence, my own disability, I had to have a lot of different surgeries, some spinal reconstruction, foot reconstruction, and de-tethering of the spinal cord mostly.

And because of that, there was a lot of periods in my life where either my disability was completely invisible or it was extremely visible ’cause I was recovering from surgery. And that kind of put me in a very unique position to experience both having a very invisible or visible disability.

And it made things very difficult in terms of accepting myself and trying not to worry about others’ judgment. But I was very fortunate that this business is what allowed me to embrace myself. Having to explain the business and my whole business pitch over and over again at different conferences or business events allowed me to grow very comfortable.

‘Cause every time I explained it somebody would be like, “Oh, I have that,” or, “My niece has that,” or, “A family member has that,” or, “A friend has that.” And it was very eye-opening to realize just how many people suffer from some sort of incontinence, and it allowed me to become a bit more comfortable in my own skin growing up and become more confident in having incontinence and having a disability and being more outspoken about it. That way, others wouldn’t feel the way that I felt when I was younger. 

Bruce Kassover: Makes sense. Now tell me this, though. When we talk about incontinence, we’re often talking about many of the different common types of incontinence that our listeners face. There are things like overactive bladder where you just feel like you have to go all the time. Or there’s stress urinary incontinence where, like, when you laugh or you sneeze or you jump that it can cause leaks. What sort of, how did incontinence manifest itself in your case? 

Bella Duarte-Crespo: I have an overactive bladder, just as you mentioned. And when I was younger, I was able to get by without using catheterization, but, see, this is where my mom will have to come in. I was really young for this. I started catheterizing very young. I think I was still single digits, if I’m correct. 

Teresa Duarte-Crespo: Around eight years old. 

Bella Duarte-Crespo: Yeah. And that was the biggest relief for me. It was very basically life-changing. Catheterization was the first time I was fully able to void my bladder since my body was not able to do that.

And now I’m on bladder relaxants so that the overactive bladder doesn’t bother me in my day-to-day life, and those have been incredibly helpful, too. I also suffer from bowel incontinence, and that’s a majority of the incontinence that affected me when I was younger and in school. Because while I was able to learn and began using catheters at that age, it was definitely more difficult figuring out how to work with bowel incontinence, and both incontinences together is what pushed me to go ahead and find my own solution.

Bruce Kassover: They do say necessity is the mother of invention. So tell me, so you decided one day, ” I can’t take managing how I have been managing.” What was going through your mind, and what was that sort of invention and discovery process like? 

Bella Duarte-Crespo: It was very much, as you said, necessity. It was really difficult to go throughout the whole school day. My mom and I tried so many different things. We… I had an extra lunchbox and that, and my extra lunchbox would have all my medical supplies in it. But then it became awkward ’cause why was I taking a lunchbox into the bathroom?

And other times I would have to carry supplies in my hand or I would have to have a teacher have access to my supplies, and it just became really complicated the more and more we tried to find a solution, and that’s when we realized that what we were doing so far was not working for me.

So when we very, at the very start of creating our product, it was a lot of prototyping and trying out different materials, different places. We used to put the pocket in my school uniform at the start, then at my shorts, and then eventually we ended up putting it in the underwear. And I was always the guinea pig. I was prototyping everything at school. I’d come back and I’d tell my mom, “Oh, this worked,” or, “This didn’t work.”

I’ll never forget one time we were testing out a new fabric for my pocket in the shorts actually. This is very, one of the very first iterations. And I’ll never forget, when I sat down, you could see the pocket go up through my PE shorts, and I was like, “Oh my gosh.” So that’s when we knew that wasn’t gonna work out, out for me. So different experiences like that is how we started slowly building our way up to what the product is now.

And I’m sure my mom has way more memories of this than me if you wanna jump in, ’cause I was pretty young and we were doing all this prototyping at school.

Teresa Duarte-Crespo: Yes, it started… Actually, now that you mention it, I, the way we approach it was, we never thought it was gonna be a business, but I did it more of a game with her because she was so young and to engage her.

So I would tell her, I know the first question was, “If we have a magic wand, like when you go to Disney, and you can invent something, what will you invent?” And that’s how the game started. And then we would go to Jo-Ann Fabrics, and I said, “You’re the boss. You choose the materials.” Of course she would choose giraffe designs in the material.

We’ll do the zipper with different colors, and we got Velcro, buttons. So it became more of a game, but also it was a way for her to focus more on the solution than the problem. And yeah, we never thought it was gonna be a business, and then little by little we started tweaking it. But my concern was more about how can I help her find a solution, because I couldn’t go to her, with the school, and help her, with the supplies and the things.

And she was having a lot of issues with kids didn’t wanna play with her because she would have accidents, and of course there’s some odor. So there was all these things that she had to deal with. And as we were trying to figure out, okay, how can she go and change and manage her thing on her own. So by doing the games and creating, I didn’t think it was a business, but it was more about a solution for her.

And then once we figure it out, okay, this is working, that’s when she told me, “Mom, why don’t we help other kids? Why don’t we do this and we sell it…” Not sell it. She was saying give it a- to other kids. I said, “Okay, no, we have to do a business. We can’t just give it away.” But in, it was in her mind ’cause she went through the process. So that’s how it started. 

Bruce Kassover: That’s amazing. I loved how you mentioned focusing on the solution more than the problem. That’s gotta be really helpful and give you a great perspective. So you’re literally choosing fabrics and pulling out the sewing machine and the glue and creating designs. That’s pretty fascinating. Are you somebody who’s experienced at making garments and things like that, or was this a total learning…

Teresa Duarte-Crespo: Not at all.

Bruce Kassover: Really? 

Teresa Duarte-Crespo: Not at all, but I am from Colombia, and we used to travel all the time in Colombia, and that there is very easily accessible. So I was able to take underwear there with extra fabric when I found something that I liked. And then with Isabella I said, “Okay, can you give, can man- not manufacture, but hand sew it?” And it was very economical. 12, and then we’ll try it. So I had that help that I was able to have, somebody else do it for me.

In the meantime, Isabella and I will just, do a little bit of sewing and gluing. So it was a little bit of both. But no, I don’t, I didn’t have any experience. I was just going by creativity. Okay, what can we do? And, do a little buttons and zippers, things like that. 

Bruce Kassover: That’s very cool. And it’s fun because it’s not just, coming up with a solution that’s like a medical solution. There’s a fa- there’s fashion involved as well. Sure. And taste and all, and style and all that sort of stuff. So I guess that adds a nice element that I’m imagining Bella, you probably enjoyed that part of it also.

Bella Duarte-Crespo: Yes, it was very fun. Now at University of Notre Dame I’m studying design, but back then that was my very first introduction to design. I was just sketching in a little notebook, super messy. And eventually later on we refined it into what I wanted it to be, which is patterns on the underwear that would be appealing to kids, so little girls and little boys.

So that was very much the very beginning of my design journey, and it was very fun when I was younger. It was a great way to get me involved in the whole making process. 

Bruce Kassover: I love hearing that. So now is the product really designed towards younger people specifically? 

Bella Duarte-Crespo: Yes. This is specifically for children. We have gotten quite a few requests for young adults or even older adults throughout the years. But we’ve, since we’ve geared more towards disability advocacy, we haven’t had yet a chance to do that next iteration of My Private Pocket, but it’s definitely something I wanna look at into the future ’cause I’ve gotten a lot of requests for it, and I’m growing, so the business always grows with me, like it has been throughout all my years.

So probably when I’m a bit older, I would love to look into a second iteration of My Private Pocket for young adults or adults in general. 

Bruce Kassover: That’s great. You focus on your core audience, and then you can start to expand as you get more entrenched in with that audience. That’s an absolutely great approach.

But there’s more than just design that goes into this, right? Because there are things like waterproofing and lining and stuff like that. So technically how difficult was that to get right, or get to the point where you felt it was ready to go to market?

Bella Duarte-Crespo: Definitely my mom should be the one to jump in. I was pretty young, but she was the one who was always talking to manufacturers, looking for that right type of fabric, and she even traveled looking for the perfect type of fabric, right? 

Teresa Duarte-Crespo: Yes. I, we actually we tried to do it in the United States and people are, let’s say manufacturers didn’t pay attention to us. They were like, “You wanna create what? A pocket in an underwear?” So it’s very, I got a lot of resistance. I even went to Colombia too, and it was hard. I end up going to China, and that was years ago, where I was able to find and work with a manufacturer that can actually create and develop.

And yeah, we were looking for the different, like we wanted to make sure it was some type, the underwear, the pocket had some type of water resistant but is comfortable for the skin because they have to wear it. So definitely Isabella was the guinea pig. And then I would ask her, “Do you want some extra liner in, inside?”

And she’s “No, I don’t wanna wear this during the day.” So literally it was based on what it would work for her and what problems she had, and I would go back and forth and talk to the manufacturers and you know, do some trials. She was more involved in the creativity part, like she said.

She wanted designs. She wanted ice cream, for example, in the, in the designs, and I’m like, “We cannot put in the fabric of the underwear ice cream.” So we’re able to create, okay, we put some little dots or a little something with some ice cream so yeah, she was more involved in the fun part. Like I told her, you were, creating even the mascot, like helping us figuring it out. And I was behind the scenes trying to figure out what would be the perfect material for this type of underwear. 

Bruce Kassover: Okay, that’s great. So now you’re solving a problem specifically for your daughter, Bella, for yourself. How do you decide that, okay, we have this thing that we’ve created that’s helpful, to go from there to actually a marketable product and reach out to the rest of the world to get them to take advantage of this also? 

Teresa Duarte-Crespo: It has been a challenge. But we started with a Kickstarter and wanted to get a feel were other people interested, and I did some research to find out if there are other medical conditions that will require or will need a pocket.

So we got some numbers, and I was like, “You know what? Let’s just launch it. Let’s start with it.” And then we started getting the feedback and we saw the need and that people are purchasing. So literally we did a leap of faith. And from more of a family hard part, I was more, my husband talk about it, it’s “Okay, let’s just do it once. Let’s sell it. That will help Bella open the doors,” because we noticed how it gave her confidence and she felt more comfortable to talk about it. And we’re, that’s when we said, “You know what? Let’s do a leap of faith. Let’s just do it. If we don’t sell it, we’ll donate it.” If anything, we went through the experience, but it actually opened doors.

And yesterday, as a matter of fact, we just got another mom that wrote to us saying that her daughter uses diabetes equipment and it fits in the pocket. So it’s opening doors to other conditions. It wasn’t like right away we thought, “Oh, this is gonna be great.” We were like, “Okay, leap of faith. Let’s see.” So it has worked out. 

Bruce Kassover: That’s amazing. So now you take this leap of faith and you do the Kickstarter. How the … was the Kickstarter itself received? The … was right off the bat was-

Teresa Duarte-Crespo: Yeah, we were able to obtain $12,000. So with that we’re like, okay, there’s definitely a need and there’s at least there, there are people that are interested and that actually supported us. So that’s how it went. 

Bruce Kassover: Excellent. So now you have a website where people can go and order? 

Teresa Duarte-Crespo: Yes. 

Bruce Kassover: What is the website? 

Bella Duarte-Crespo: www.hidden-innovations.com. That’ll take you straight to the website, or you can also go on our Instagram, Hidden Innovations, and we have a link to our website there. 

Bruce Kassover: That’s great, and they’ll find different designs, different styles, things of that nature? 

Bella Duarte-Crespo: Tons of stuff. We have our very first product, which is the underwear with pockets. we have a bunch of fun merchandise like notebooks, stickers T-shirts, hoodies that are all very have very empowering slogans for anyone that can wear them.

And we also have more recently another product of ours that’s adaptable, which is a hoodie that has a hidden pocket in it. So usually in a hoodie you have that front pocket where you can put your hands in it. But underneath that we have a zippered pocket that anyone can use. It could be for medical supplies, it could be for valuables, a wallet, keys, phone. And we also made sure it was big enough so that an EpiPen would fit in there for those with allergies.

And that was our way of expanding our audience even more and making sure that even if you’re not a child, you don’t need an underwear because of incontinence, there’s still a different type of adaptable clothing that anyone can wear, and we call it the Worry Free Hoodie because we want people to be worry-free in terms of caring about their condition and managing their condition.

Bruce Kassover: That’s fantastic, and everybody loves a hoodie, so that’s great to hear also. So now you’re at the University of Notre Dame. You are studying design. Where do you see yourself in the next, say, five or 10 years? 

Bella Duarte-Crespo: Ooh, that’s a big question. I really hope to deep dive more into design work. It’s really my passion, and I really enjoy it. But I also wanna combine that to see if I can make a bigger impact in the advocacy world. I’ve unfortunately been through a lot of different experiences where there’s been a lot of kind of injustices towards those with disabilities. One example is I was… my family and I, we like to travel a lot, and with that comes managing my medical condition, so carrying a lot of medical supplies and also taking my mobility aids with me, which usually is a wheelchair when we’re traveling. And one time we were traveling, and we had a connecting flight and at that connecting airport, they left my wheelchair, and they weren’t able to get my wheelchair back to me for about 14 or 15 days.

By the time I finally got my wheelchair back, it was the day before we were leaving to go back home. So those kind of things that I’ve experienced with a disability fuel me even more to want to make a bigger impact and really make sure that industries and businesses and people are paying attention to those with disabilities and really paying attention to our needs because it’s not something extra.

We just need that accommodation so that we get the same access as everyone else. And since I’m very passionate about both disability advocacy and design, I’m really hoping in the future to hopefully partner with a company, maybe even do some licensees with a larger company. That way they can sell our product, and I can reach a bigger audience to make sure we can have a bigger impact and kind of erase or eliminate all those injustices that those with disabilities are often forced to face.

Bruce Kassover: I have a feeling that Shark Tank is in your future. 

Bella Duarte-Crespo: That’s a question we get a lot. 

Bruce Kassover: I can imagine. So as you live with spina bifida, you’re talking about how you had a number of medical procedures. You’ve had surgeries and some other things. Typically for somebody with your condition, what is the prognosis? How much, how much is treatable? How much is the sort of thing that, that is just chronic and you have to learn to adapt? What is the outlook like for somebody who’s dealing with your condition? 

Bella Duarte-Crespo: Problem with that is that it’s very different depending on the person. I’m very fortunate that I’m basically middle of the road. I don’t have extremely, like super extreme symptoms, but I’m also not symptomless like some people with spina bifida are and don’t find out until way later in life, and they happen to get, for example, an MRI and it shows up and they would never have known.

So I’m very much middle of the road in that sense. So with people with spina bifida, it very much varies depending on the person. Luckily, I’m very middle of the road, so I’m very fortunate that I don’t have extreme symptoms, and there are others who barely have any symptoms or at all. And in terms for me, I have had three de-tethering of the spinal cord surgeries, and I’ve had one foot reconstruction surgery. And all of that has worked out great for me because I’m able to walk, and I’m able to not have to be completely dependent on my mobility aids while still using them day to day, especially in college as things ramp up.

I’m very fortunate that my disability is very dynamic, and with that, treatment varies a lot. There’s physical therapy. I do massage therapy and even medication for things like overactive bladder or also to prevent any infections with my bladder. It very much depends on the person, but in my case what’s most affected is definitely my bladder, my bowels, and my whole ability to walk long distances or stand for long times. But since spina bifida is super dynamic, it really depends on the person what kind of treatment they’re gonna be needing.

Bruce Kassover: So wow, that’s really interesting to hear. So as you know, this is Life Without Leaks, and one of the things we always like to ask our guests before we’re done is to see if they have one little hint, tip, strategy, bit of advice that they could share to help others live a life without leaks. So now I’m gonna ask you if you might have one. 

Bella Duarte-Crespo: I always love being prepared. That is my motto. Anyone with incontinence or any sort of medical condition or any kind of symptom knows that you always have to be prepared. So that’s the number one tip I always live by. To make it fun for me when I was younger, I had really cool backpacks.

And as I’ve grown older, I have beautiful purses. That’s why- my way of making it fun for myself to make sure I’m prepared. I always have a very cute bag with me, but within that I have my catheters, any wipes I might need, medical supplies, even normal stuff like a little cloth to clean my glasses. I always live by being prepared to make sure that you can have a fun day and not have to worry too much and live a life without leaks. 

Bruce Kassover: I don’t think that I could expect better advice from anyone, so I appreciate hearing that. Thank you so much. And we’re going to make sure to leave a link to your website and your Instagram in the show notes so anybody can go and find it there instead of having to remember and type anything. They’ll just be able to click.

But Bella and Teresa, thank you so much for joining us today. We really appreciate everything you’ve had to offer, and wish you just incredible success with your innovation. And hopefully it catches on gets the, an audience that’s as wide as it should have, and as many people as possible take advantage of it. So thank you. 

Teresa Duarte-Crespo: Thank you for having us.

Bella Duarte-Crespo: Yes, thank you for having us, Bruce. You’ve been a great host. 

Bruce Kassover: Excellent. Thank you. Thank you. 

Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.