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07/22/2024 | News release | Distributed by Public on 07/22/2024 20:29

Living with a Rare Disease, This Recent Grad Is Trying to Help Others Like Herself

Living with a Rare Disease, This Recent Grad Is Trying to Help Others Like Herself

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Living with a Rare Disease, This Recent Grad Is Trying to Help Others Like Herself

Alexa Quintero (Questrom'24) is working to reimagine the medical device that's keeping her alive

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Living with a Rare Disease, This Recent Grad Is Trying to Help Others Like Herself

July 22, 2024
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Alexa Quintero still remembers the moment her life changed forever. She went to bed one night in 2019 with what she thought was a bad stomach bug. More than five years later, she says, the pain she experienced that night has yet to improve.

After a long, frustrating journey through the medical system, Quintero (Questrom'24) was diagnosed with a rare genetic connective tissue disorder called hypermobile Ehlers-Danlos syndrome. Fewer than 200,000 people in the United States are known to have the disease, but many say the number of those affected could be much higher because of misdiagnosis.

The disease is caused by defects in collagen, the protein that provides structure and support to a person's skin, muscles, bones, and connective tissues. Symptoms include joint dislocation, stretchy skin, scarring, chronic pain, and, as in Quintero's case, severe gastrointestinal disorders. Unable to eat or drink, she has relied on a feeding tube for the last three years.

"My health is truly a full-time job," says Quintero, who graduated in May with a degree in business administration, with a concentration in law. During the past year, she would set up her nutrition schedule on the feeding pump each evening, while mapping out how to get to medical appointments in the city and emailing professors that she'd have to miss class-again-for one of those appointments. Even being in class isn't easy. "I'm constantly monitoring my blood sugar," she says, "making sure it's not dropping, taking meds as scheduled."

The pump she uses would often sound an alarm at the worst possible moments. "It loved to scream at me in the middle of class if the tubing got kinked," Quintero says. "Then everyone would start looking around, and you know the feeling-you never want to be the person whose phone is going off in the room."

After she got her feeding tube, Quintero decided to begin sharing her medical journey publicly, posting videos on TikTok-she now has more than 80,000 followers. Many of her posts have been viewed millions of times. "I didn't really expect it to go anywhere, to be honest," she says. "I'd spent so much time those first two years trying to pretend that everything was still fine and making sure no one found out about my health issues. So I needed-for myself, therapeutically-to break down those barriers."

Not content with just sharing her story, Quintero wanted to help improve the lives of others who depend on medical devices, like the type of feeding pump she uses. She began working on a plan her Questrom junior year. For her Cross-Function Core Project, where students build a comprehensive business plan for a new product or service, Quintero and her teampitched an improved feeding pump. "That pitch was so much fun," she says. "I got to talk about my feeding tube and share it with the class. It broke down the barrier of, oh, what's with that girl with the pump?"

Ultimately, her professors didn't think the pump was the right fit for a CORE project. But last summer, she and biomedical engineering major Audrey Lindsay (ENG'27) became friends. Lindsay noticed how frustrated Quintero would get with her pump and with the lack of progress in developing better technology. "Audrey said, "I could build a better one of these,'" Quintero recalls, "and she started listing features that she could easily fix."

That conversation inspired Quintero to select a proposal to create an "improved enteral feeding pump for the modern user" for her Kilachand Honors College Keystone project. The new pump system she and Lindsay designed included a universal charger and touchscreen controls and would interface with a user's phone. Rather than setting off alarms when it becomes clogged or develops a kink, the pump would send alerts to the user's watch. They called it Tubie2Go.

"A lot of people with my condition have mobility issues, and pressing down on the buttons is actually really hard for their joints," Quintero says. "So by having a touchscreen and all of these other features, it's going to be accessible to a lot more people." She presented her project just before graduation.

Obviously, there's a long road in the journey from classroom proposal to an FDA-approved medical device, but Quintero, who is taking a gap year before heading to law school, intends to keep working on Tubie2Go with Lindsay, who is set to pitch the manufacturing of a prototype as her College of Engineering senior design project.

"I never want anyone to get diagnosed with a condition like mine and think that is the end of their life," Quintero says. "Because it's not-it's not."

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