Meet the TikTok Star Who's Redesigning Her Life-Saving Medical Device

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.

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.”

“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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Video chapters:
0:00 Alexa Quintero dance background
0:46 Quintero explains her rare genetic connective tissue disorder
1:05 How Quintero's body has been effected by this disorder
1:28 Quintero's non-traditional BU experience
2:12 How Quintero began sharing her story on TikTok to help others
2:57 Reimagining her feeding device with a biomedical engineering student
4:03 Quintero's mother shares about her daughters experience
4:20 Conclusion
5:08 Outro

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