UC student with rare diagnoses creates app to help patients track symptoms

By Lindsay Stone

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    CINCINNATI (WLWT) — An engineering student at the University of Cincinnati is turning her pain into purpose, creating an app to help patients track their symptoms and manage their conditions.

Amelia Wares spent years in and out of the hospital with a condition that left doctors puzzled. Now, she’s helping other chronically ill patients get the diagnosis they need.

Wares grew up dreaming of playing softball at MIT until she was hit with chronic illnesses in her last year of high school. Her journey to find a diagnosis’ would span years and leave doctors without answers.

But now, she’s enrolled at the University of Cincinnati and using her experience to help patients just like her.

“I felt like I was dying, and I didn’t know what to do,” Wares said.

College is supposed to be the time of your life. Instead, Wares faced a series of health challenges that left doctors puzzled.

“I felt like the feelings I was feeling weren’t real, like it was all in my head,” Wares said.

It started years earlier when she was a teenager.

“I dislocated my shoulder 40 times,” Wares said. “Finally, my senior year, when I broke three bones in my hand and then both the bones in my leg, and I didn’t even realize I’d broken it.”

Wares was experiencing daily panic attacks, having severe allergic reactions, and soon became bedridden. After years of hospital visits, tests and procedures, she was finally diagnosed with a rare trifecta of conditions.

“Ehlers-Danlos syndrome, which is a connective tissue disorder and then postural orthostatic tachycardia syndrome, which is a form of dysautonomia and then mass activation syndrome,” Wares said.

When her health improved, Wares enrolled at UC and became determined to help others facing chronic illnesses like her.

“I wanted to develop an app that tracks your symptoms at frequency, but also looks at the correlations to outside factors like medication efficacy,” Wares said.

The app uses data correlation to help patients and doctors identify patterns, which Wares hopes will help patients get a diagnosis sooner.

“There was no doubt that she was on to something really, really important,” said Jason Heikenfeld, a professor of biomedical engineering.

The app is in its early stages. But Wares hopes one day soon, she can help patients just like her.

“I’m still in the process of accepting the fact that I woke up one day and I was sick, and I never got better, and that was really difficult to accept,” Wares said. “As much as I hate that all of those other people have to deal with these symptoms, we were given it, but now we can kind of work together.”

Right now, Wares is conducting trials. She targets enrolling between 100 and 200 patients by December of this year and plans to roll out the app to the masses by the time she graduates.

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