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How Ehlers-Danlos syndrome inspired Jane Adamé to build the Keela menstrual cup

How Ehlers-Danlos syndrome inspired Jane Adamé to build the Keela menstrual cup

7 min read

Jane Adamé had an idea - a menstrual cup that's easy for all bodies to use. For Adamé, who lives with Ehlers-Danlos syndrome (a group of disorders impacting the connective tissue and causes the joints to easily dislocate), this idea was of particular urgency. She struggled with using a conventional menstrual cup and knew that others did as well, so she, along with medical device designer Andy Miller, teamed up to create the Keela Cup, which they funded with a Kickstarter campaign in January 2018.

Keela is now known as the FLEX Cup, since it was acquired by the FLEX company in October of 2018. Adamé and Miller's design solved the problem of being difficult to remove, a problem FLEX had been wrestling with for a long time, FLEX founder and CEO Lauren Schlute told Forbes. The cup, and the work of disability driven design, are already changing lives. We spoke with Adamé about taking care of herself, optimism, pushing through, and of course, menstrual cups.

Modern Fertility: You successfully funded the FLEX Cup (formerly the Keela Cup), via Kickstarter in 2018. What did you do to maintain your mental and physical self during that period? How do you maintain it now?

Jane Adamé: When I started the Keela project, the goal was two fold; to create something that made a positive impact on others, and to find a way to do meaningful work that didn’t overtax my body. Of course, my positivity got the best of me in a sense, because starting a company from scratch is incredibly taxing. I learned to declare my needs, and take rests even when there was still tons on my to-do list. If there was anything incredibly time sensitive that I just couldn’t do, I had to allow myself to let Andy to take over. This lesson was forced upon me a few times, because stretching myself beyond my capacity could leave me completely unwell for weeks at a time. (In all honesty, I still get beat over the head with this lesson on occasion.)

What helped the most was to reset my expectations-- health is not something that I can choose to have, but I can choose how I take care of myself. For example, I have insomnia that's pain-induced, so instead of feeling frustrated about not sleeping, I go and get my heat packs, sparkling water, I watch tv, I try to be the most comfortable that I can and let myself do that. It can be saddening to think of my body as this temperamental entity that’s somewhat separate from myself, but in some ways it’s easier to think of it as a loved one I care about. That makes it much harder to stay frustrated at myself for my pain and limitations.

Modern Fertility: Let's talk about menstrual cups in general - what makes them difficult to use?

Jane Adamé: Menstrual cups have wonderful benefits, in a lot of ways they're this holy grail little product, but they also come with a pretty steep learning curve. They require that the user be able to reach inside their body, maneuver it in, and place it correctly.

Removal can be particularly challenging or scary, especially for new users. The cup forms a seal with the body once inserted, so the wearer has to be able to reach in while keeping the vaginal muscles relaxed (harder than you think) and then use a finger to manually push in the side of the cup to break the seal and grasp the bottom to pull it out. This can be difficult for able-bodied people, let alone those with mobility challenges. Even folks with bigger bellies can have a hard time reaching over to access their vaginas in this way. You don’t have to look far to find stories of all kinds of people ending up in the ER to have their cups taken out, which I personally believe is a risk that should be eliminated from anyone’s menstrual care experience.

We wanted to simplify the menstrual cup and make it accessible for people with different body sizes, anatomies, and abilities. We’ve worked really hard to perfect aspects of the design that make insertion easier (easy to fold but opens effortlessly in the body, which involves a careful balance of a soft cup with enough hoop strength of the rim for it to want to open on it’s own) and a pull string loop, which has now be dubbed the ReleaseRing™. This is a soft, flexible piece that replaces the traditional cup’s stiff, uncomfortable stem. It connects to the top rim of the cup and through the bottom of it via a water-tight seal, so that the wearer can simply pull on the loop and the cup glides out like a tampon. Since a finger remains in a loop, it prevents “oops I dropped it in a bloody toilet” moments, as well as making the cup more accessible for those who can’t grasp well with their fingers.

Our objective was to make insertion and removal as familiar as possible to a tampon user to reduce that learning curve, sense of fear, and break down barriers for folks who felt that existing cups were not made for them. This one is.

Modern Fertility: What information have you gotten that made you feel the most empowered?

Jane Adamé: Of course, the first thing that pops into mind is hearing from people like me who have challenges with traditional cups and find great relief in my design. It is one of the best feelings in the world to know that you solved a problem for a complete stranger, and they felt compelled enough to write to you about it.

Day to day, I lead a project called Operation Listen, which is a qualitative connection process that allows us to really listen to our customers one-on-one and learn more about how we can better serve them. It funnels into messaging (marketing, educational materials) and product development. I serve as a conduit between customer and company, which is a big responsibility to get right, especially in an industry and population that has not been granted a strong voice.

As a former hairdresser, listening to what someone says and translating it into action is what I know how to do. To be a major driver in an innovation-focused company in an industry where this is much needed, led by the word of our customers, is a very impactful position to be in. The way that I interpret information and communicate that to my team could have long lasting implications that change how people think about and interact with their periods for generations to come, and I see this as a great responsibility. To summarize, I’m endlessly empowered by the voices of our current and future customers.

Modern Fertility: What does inclusive design mean to you?

Jane Adamé: I think the idea has wonderful intentions, but it's a challenging term for me to put my weight behind. It seems like the idea is "just ask some disabled people," and that feels exploitative. When I talk about disability-driven design, that means disabled people are the catalyst, instead of an afterthought. Liz Jackson, a thought leader in this space, talks about “Designing WITH” which I think is a very important designation.

Just because something claims inclusivity, doesn’t mean it is at the root. I’m proud to have elbowed my way into a space that otherwise may not have made room for me. With the success of this particular project, I hope many more eyes can open to the power of letting disabled people and other marginalized individuals step in and do the work they have the power to do.

Modern Fertility: What advice have you gotten that's shifted your perspective?

Jane Adamé: When I was diagnosed with hypermobile Ehlers-Danlos Syndrome, I asked my geneticist if I could possibly achieve a pain free day. He said that it was very likely that I'd never have one. He advised that if I were an optimistic person, I could plan for activities I might want to do if such a day arose, but that I should not have an expectation here. Maybe this doesn’t seem like advice in the classical sense, but it created a major thought shift for me.

It was devastating, and I felt like my primary mission at the time (to “cure” my pain) had come to a halt. But--it shifted my perspective in regard to my goals for my body. My limits are changing, but I can still find wellness and joy, it's about changing the way I do things.

We can all learn to do things creatively, to make things work for us, to adapt our surroundings to carve out our own version of simplicity and accommodation. It wasn’t entirely my body’s fault that my menstrual cup wasn’t working-- the product itself had room for improvement.

The cup, for me, was an embodiment of practices I had begun to put in place all around me. This took a lot of the weight and blame off of my physical self and how it connected with my identity. I began thinking of my body as a power tool for design; things that don’t work well for me are a magnification of things that don’t work for other people. By tapping into that, and utilizing my ability to listen and empathize with others, I could change the perspective about myself from something deficient to something powerful.

Modern Fertility: What do you love about what you do?

Jane Adamé: With FLEX, I get to be part of a bigger team that's driven by the same mission as mine. It isn't just me and Andy in a tiny rowboat anymore! It’s still a small team, less than 20 people, so it still feels familiar and close knit. I think this leads to a different process which allows us to remain closely connected to our customers. With both products currently offered by The FLEX Company, the FLEX menstrual disc and the new FLEX Cup (formerly Keela Cup) my favorite part of any day is receiving feedback from them.

Of course, it is incredibly heartwarming to hear about how these products are positively life-changing for so many people, but I am equally motivated by those who take the time to tell us about what isn’t working for them. That’s because we’ve created a schema shift-- even if someone tries the product and it doesn’t meet their expectations, they know that they can ask for more from us and they’ll be heard. I’m not sure if people are writing in to big tampon companies to say “hey, can you make this different for me?” The fact that our customers know we are committed to serving their bodies just how they are makes me incredibly proud to do the work that I do.

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Chanel Dubofsky

Chanel's writing has appeared in Cosmo, Rewire, Lilith, HelloFlo, & Extra Crispy. She has an MFA in Fiction from Vermont College of Fine Arts & lives in New York. Follow her @chaneldubofsky.

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