'Patients Always Remembered Seeing John': How Dr. DeMasi's Memory Lives on at UK

A young John DeMasi foreshadowed his career at 5 years old when he chose his first Halloween costume. Wearing green scrubs from a teddy bear and a stethoscope so big it dragged as he walked, he proudly impersonated a doctor.

John would eventually carry on that childhood dream, powering through nine years of medical training to become Dr. DeMasi. His family wasn’t surprised. John’s father, Jim DeMasi, MD, opened John to a world of caring for others. And according to one of his mother Ginny DeMasi’s friends “if there were two magic markers and two coloring books, and three boys in the room, he would always let them go first.” John simply cared about other people, and a job as a doctor was a perfect fit.

John’s career path led him to the University of Kentucky College of Medicine’s radiation medicine residency program, where he made a profound impact on his mentors and fellow trainees through his compassionate nature, intense focus on work, and innate ability to connect with patients.

He maintained these qualities even through unrelenting challenges, including one that would ultimately cut his life short. He died in February 2020 at the young age of 34. Still, he made an early impact on health care, and he continues to do so even after his death.

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It was the evening before his second year of medical school when John looked in the mirror and didn’t recognize himself. After suffering a week of shoulder pain, his right eyelid was drooping, and his pupil was constricted.

At age 27, John learned he had vascular Ehlers-Danlos syndrome (vEDS), a connective tissue disorder typically caused by a mutation in the COL3A1 gene. The condition is considered the rarest and most severe type in the EDS family, and currently, there is no cure.

John described the gravity of the moment in his personal statement that he submitted to apply for residency at UK. “I had lost my health in an instant,” he wrote, “and it was never coming back.” In the coming years, John would be thrown into a life of constant medical appointments – as a patient, not as a doctor as he had planned.

Through his radiation medicine residency, John was surrounded by individuals with terminal illness every day while carrying the weight of his own diagnosis. Rather than letting the diagnosis consume him, he used it to build empathy with his patients. This stuck out to Marcus Randall, MD, chair of radiation medicine, and Mahesh Kudrimoti, MD, residency program director.

“Patients always remembered seeing John. He had very good bedside manner,” Dr. Kudrimoti said. “That’s something a lot of physicians develop, but he had innately good manners and that’s what helped him connect with people.”

No one saw that more closely than Bhaswanth Dhanireddy, MD, who completed residency training with John. Together, they spent long days – a lot of them beginning before 6 a.m. – caring for patients and studying. Dr. Dhanireddy said John was vital in helping him adjust to cultural changes after attending medical school in India and that he strived to emulate John’s patient-centered care. Now as a physician in Kansas City, “there is a little bit of John” through each of Dr. Dhanireddy’s patient interactions.

“Any person who goes through medical training can deliver treatment options to a patient. That’s not what sets a doctor apart,” Dr. Dhanireddy said. “What makes John unique is that he cared for them as a human being.”

While caring for cancer patients, John also was determined to improve accessibility to testing, treatment, and care for those facing vEDS. In 2017, he joined forces with his brother, David DeMasi, a businessman, to start a nonprofit called FIGHT vEDS. The group aims to help patients learn more about the rare disease, gain access to affordable genetic testing, and link them to available clinical trials.

Using his background as both a patient and a physician, John educated patients about vEDS, helped them find affordable options for genetic testing, and rallied the community to support research. The research efforts John supported continue on today, including an upcoming clinical trial regarding a new way to prevent arterial rupture in vEDS.

“There were many times where John would be in sessions with vascular EDS researchers, talking about the stark reality of the condition and the outcomes. He brought energy to those meetings, asking questions and learning so that he could translate for patients in a way that would create optimism,” David said. “He put himself in the middle of hearing these difficult truths while looking for the silver lining, striving to connect patients with more information and give them hope.”

David continues to run their nonprofit with an ultimate goal of finding a treatment for vEDS.

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Knowing John’s ever-present admiration for medical education, Dr. Randall and Dr. Kudrimoti knew the best way to carry on their former resident’s legacy at UK. They collaborated with the College of Medicine philanthropy team to establish an endowed lecture in John’s memory.

The first annual DeMasi Endowed Lectureship was held in November, bringing together John’s family, his former colleagues, and his mentors for a day of learning, connection, and advancement of medicine. As a nod to John’s undergraduate institution, University of North Carolina faculty Larry Marks, MD, FASTRO, delivered the inaugural keynote address.

David was scheduled to make a speech, and it was important to him to be there; however, his baby’s due date was approaching, and he was afraid to travel too far from his home in New York. Instead, he delivered a talk virtually.

As fate would have it, David and his wife, Amanda, delivered a healthy baby boy the night before the lecture. They, fittingly, named their child John.

John DeMasi with dogWhen John first learned of his condition, he knew his life was about to change. He knew there would be challenges, and that there was a significant chance it could shorten his life. That never prevented him from following his childhood dream, acting upon his compassionate nature, and making a difference for his patients.

“I didn’t need this illness to make me a quality physician. Already, I possessed intangibles which I believe would make me an ideal residency candidate: authenticity, magnanimity, and resilience,” John wrote in his personal statement. “I will strive to be a resident that patients are comforted by, peers enjoy, and physicians appreciate training.”

It’s safe to say John accomplished his goal.

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To learn more about the DeMasi family’s fight for vEDS treatment, visit www.fightveds.org.

To learn more about the DeMasi Endowed Lectureship and how you can contribute, contact Taryn Derrick at taryn.derrick@uky.edu.