Emily Levy is a 27-year-old currently living in Providence, Rhode Island. Levy was diagnosed with Lyme disease at the age of 19. Lyme disease is transmitted through the bite of an infected tick. In some cases, you find the tick, get it tested, get yourself on antibiotics right away, and recover. But for others like Levy, who remain undiagnosed for years, Lyme disease is entirely different.
Emily Levy’s Battle with Lyme Disease
“I grew up with this bacteria. I probably got bit by a tick when I was about six, and then it was just years and years of me being the sick child and no one really knowing what’s going on. That has really affected my brain. That’s the main thing. It really attacked my nerves.” Levy describes Lyme disease as a global pandemic that remains unrecognized in the U.S. “There are millions of people living in the U.S. with Lyme disease. Many of them don’t even know it. They’re often misdiagnosed with things like MS, ALS, fibromyalgia, etc. We’re told it’s all in our heads, it’s anxiety, it’s depression.
“Most people don’t know that chronic Lyme disease exists. It is a disease that doesn’t live in the blood, it lives in the tissue, primarily. It’s a corkscrew shape and drills into your body. That’s why most blood tests are not accurate. Unless you get your blood tested at two specialty labs—which, of course, are out of pocket in the U.S. Even if you do get a standard Western blot CDC testing, it’s only about a 50% chance that it’s accurate.”
One of Levy’s personal missions in life is to help prevent people from becoming unnecessarily disabled.
Mighty Well’s Beginnings
Levy attended Babson College with a scholarship in women’s entrepreneurial leadership. It was at Babson that the concept for Mighty Well was born.
“It started as a college project,” Levy says. “My professor encouraged me to solve a problem in my own life because when the going gets tough, you have to go back to that central ‘Why? Why are you doing this?’ When I got sick, I needed a PICC line. It’s basically a long tube that hangs out of your arm and goes all the way to your heart. I was a sophomore in college. I was going to sorority events and just trying to fit in. It just felt like I immediately stood out. When I had this IV, my doctor just told me to cover it with a sock on my arm. I thought ‘That’s ridiculous,’ but nurse after nurse recommended the same thing.
Growing up in a surf shop, you see all of these technologies coming out. They’re meant to be moisture-wicking and antimicrobial, anti-stinkware. I thought ‘Why is no one creating wearables for people living with devices?’ I grew up in a surfing community, why is there no community like that for people—especially young women, living with disabilities and chronic illness?”
Mighty Well is an ever-evolving line of medical accessories designed to put “strength, confidence, and mobility back into the toolkit for spoonies and anyone else coping with a health setback.” Starting Mighty Well pushed Levy to be more public about her journey with chronic illness. “Once I started going public about my journey with chronic illness, it was like people were coming out of the woodwork. Mighty Well gave them permission to be public with their own stories. That’s really what I find most empowering. We took a concept that I needed for myself, and now we have an FDA approved product—the PICC Perfect Pro. I want to share the message that you can turn sickness into strength.”
The line is always growing and changing as more people come to her with new suggestions. “People would say ‘Oh I have a port,’ which is in the chest, or ‘Oh, I use a wheelchair.’ ‘I’m a diabetic.’ ‘My child has severe allergies.’ People just kept coming to us and coming to us saying ‘Can you make something better than what the doctor gave me?’” Mighty Well’s mission is to help people protect and manage their own medical devices. To provide others with a supportive community where they can fully lean on one another. “I like to say that we create the products I wish I had. It’s really been a wild journey coming up on five years now. Just to see how we’ve doubled our growth every year is what keeps me going.”
Challenges and Obstacles
For Levy, one of the biggest challenges in being a disabled business owner is dealing with society as a whole. “As an entrepreneur, I’ve been through some amazing accelerators and amazing programs, but they really haven’t worked with too many disabled entrepreneurs before. The message to entrepreneurs who are neuro-divergent is quite often ‘Don’t let investors know you’re sick.’ I started my business when I was 22 out of my dorm room. I thought ‘To be successful, I can’t show people that some days I need a cane. A cane is shameful.’ But after the pandemic, I thought, ’Fuck this. I need a cane, what is wrong with that?’
“My community resonates with the fact that I am disabled and I am a peer. We’re not a conglomerate. Being a disabled entrepreneur, people don’t always understand that when my brain fog starts, there’s no point in having a meeting with me. With medication that a doctor may put me on, I could be fine one moment and the next, I need to be rushed to the hospital. It’s really just dealing with other people’s perception of what disability is. But it is definitely my mission and Mighty Well’s mission to show them that your disability is an asset because so many other people are disabled—and they’re your customers. They’re your community.”
Advice for Others
Levy has two key pieces of advice for fellow disabled entrepreneurs:
1: Solve a problem in your own life. “I think that the healthcare industry is really missing the patient’s perspective. Sometimes when I drive on the highway, I see posters from the hospital and I think ‘Did they even show this to a patient?’ I would encourage disabled entrepreneurs to be public with their story because it will empower you and others. But I think healthcare as a whole is now looking to include the patient’s voice in all of this, so that’s the direction you want to go in.”
2: Build a solid team. “For better or for worse, there will be days where you can’t go to that meeting, where you can’t drive your car, where it’s a trip to the ER. So I’m so thankful that I have Yousef [Levy’s husband and Mighty Well co-founder] and Maria [Mighty Well’s marketing manager]. They really stepped up while I’ve been on my own healing journey. Find people who are opposites from you in a good way. I hate Excel and spreadsheets. Yousef does them for fun. Maria grew up with her own family business, so she’s been managing people from a young age and I trust her completely. Finding people who can amplify your mission is really critical.”
Levy invites all readers to join the Mighty Well community. “Mighty Well is a community of friends in the fight. It’s so broad. Not only are we creating wearable medical devices, we are creating a change in the conversation around what it means to be disabled in America.”
Has Emily Levy’s story inspired you? Let us know down in the comments.
This article originally published on GREY Journal.