Curveball diagnosis sparks UC student to develop symptom-tracking app

With a fresh cast on her forearm, Amelia Wares stood full of hope, ready for her future at MIT-until reality slid in. Photo/Amelia Wares

In 2021, Wares was living what she thought was her dream: She was being recruited to the Massachusetts Institute of Technology to study engineering and to play softball, a goal she had carefully planned for throughout high school. "My entire life plan had surrounded me attending MIT," she says, reflecting on how that ambition shaped her academic and athletic endeavors.

But just as she was about to step into that future, Wares' health took a drastic downturn. She suffered multiple pathologic fractures without any obvious cause, breaking three bones in her hand and later both her tibia and fibula. These unexplained fractures raised red flags, eventually causing MIT to withdraw its recruitment of Wares in her senior year of high school due to concerns about her injury risk. The news devastated her. "Everything I had worked for and planned around my educational journey at MIT was now over," Wares recounts, sharing feelings of identity loss.

Rather than giving up, Wares pivoted and enrolled at the University of Cincinnati in the fall of 2022, choosing biomedical engineering as her major. However, her health continued to deteriorate. Nearly every day, Wares endured multiple joint dislocations, chronic pain, heart rates exceeding 200 beats per minute, frequent hospitalizations and full-body hives. These debilitating symptoms often left her unable to perform basic daily tasks, confining her to bed for extended periods.

A new normal for Amelia Wares as a lifelong patient. Photo/Amelia Wares.

After a long and frustrating journey consulting numerous specialists, Wares was finally diagnosed in 2023 with a trifecta of conditions: Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS).

Wares' diagnosis became a turning point, not only in managing her health but also in shaping her career aspirations. "Finally having answers and a support system was invaluable for my mental well-being, but most importantly, it allowed me to grieve the healthy person I once was," Wares says. She continues to grapple with the reality that her conditions are lifelong diagnoses with limited treatment options.

Finding ways to manage her disorders, Wares continues to stay on top of her schoolwork. Through dietary changes, exercise and medications, she realized there had to be a better approach for chronic illness patients to collaborate with doctors in managing their health.

The next and most strategic step for Wares on her journey is to help herself and others find her tribe on campus. In a fast-growing group of entrepreneurially minded engineering undergrads who meet every Wednesday at the Carl H. Lindner College of Business, she found her people. This community hosts a pitch competition called the Innovation Challenge every semester, sponsored by the CEAS Tribunal and UC's Center for Entrepreneurship. It's a community led by students for students, powered to the next level by the generosity of UC engineering alum and renowned venture capitalist Jim Goetz.

As part of the Innovation Challenge, Wares found additional validation that she was onto something special. According to faculty mentor Jason Heikenfeld, "It was instantly clear Amelia had 'the right stuff' for innovation and leadership, as she was already doing the most important aspect of successful entrepreneurship. She was laser-focused on deeply understanding the problem she and others faced."

LtoR Kasey Wares with sister Amelia Wares. Photo/Amelia Wares

Motivated by her own situation and wanting to help others facing chronic illnesses, Wares is now developing an app to help complex chronic disease patients self-navigate to living their best lives. Like many early-stage founders, Wares has ambitious plans for her app. She envisions using data correlation to help patients and doctors identify patterns, like linking nausea to certain foods or missed medications, to help patients manage their disorders independently.

While fortunate to have family support, Wares also wants to include a social platform for peer support, inspired by her own experience with the Lindner Center of Hope. "I wanted a space where patients could ask, 'Has anyone else experienced this?' since many symptoms are common in EDS, POTS or MCAS," Wares says.

These disorders profoundly affect Wares' daily life and have extremely long diagnostic times, demanding constant management. Imagine balancing undergraduate studies with chronic pain and unpredictable hospital visits - this is the reality Wares faces every day. Despite these challenges, she persisted during her co-op at an area hospital, conducting trials and surveying patients to track symptoms, identify pain points and uncover healthcare gaps. Her efforts are providing clinicians with detailed data to enhance patient care.

She targets enrolling between 100 and 200 patients by December 2024.

Wares is collecting the data to compile into a software handbook that outlines the app's key features, such as the social platform, health management tools, artificial intelligence assistant and symptom tracker, by early 2025.

The app's technology will allow users to log symptoms like nausea by simply speaking into their phones. A few follow-up questions are asked and the patient is done - no need for manual tracking or note-taking. Detailed reports are then generated so patients can show clinicians how their treatments perform, backed by clear data from the app.

Heikenfeld recalls his last mentoring meeting with Wares. "I was blown away by the progress she had made," he recalls. "She is off to the races to go change the world. She has been an inspiration to me and others who deal with adversity on a regular basis. Amelia is as bold as a Bearcat can be. She is a shining embodiment of UC's Next Lives Here strategic direction."

Once Wares completes the detailed software guide, she's excited to fully build and beta test the app. "The community at Lindner was instrumental in giving me a 'stakeholder first' and 'technology second' mindset," Wares says. "And I know exactly where to go next, including early-stage funding resources like the UC Venture Lab."

While fraught with challenges, her journey speaks to resilience, innovation and a deep desire to make a difference for those facing chronic illnesses.

LtoR Co-President of Women in Entrepreneurship, Nida Aslam stands with Amelia Wares. Photo/Amelia Wares.

Wares is energized and deeply inspired by the patients she's able to help and the supportive community around her, so much so that she's already giving back to the UC community. She now serves as the inaugural student lead for UC's new Women in Entrepreneurship program. "I am incredibly passionate about advocating for women and minorities in fields where they are often underrepresented," Wares says. "My mother, an entrepreneur, has always been my inspiration, and I'm eager to help other women thrive as entrepreneurs."

As Wares enters her third year pursuing a demanding degree in Biomedical Engineering, she continues to work on her startup, advocate for, and lead other women entrepreneurs.

"I have now come to accept that I cannot change my diagnosis, but I can change the way it impacts me. While my chronic illnesses have taken a lot away from my life, they have also allowed me to discover my purpose." reflects Wares.