Sam Drazin shares experience with Treacher Collin’s Syndrome as part of the Patient Seminar Series

When Sam Drazin was five years old, he underwent five outer-ear reconstruction surgeries—but according to him, one of the most memorable parts of the experience of the procedure was not the surgery itself, but what happened afterwards. The surgeon wrapped Drazin’s stuffed bear’s ear to match Drazin’s bandage—an act that Drazin remembers to this day.

“It probably took them five minutes, but in that moment it meant a lot to me, as a young child having these surgeries, and it’s something today that resonates positively with me as a positive medical experience,” Drazin said.

Approximately 90 members of the Boston University Henry M. Goldman School of Dental Medicine (GSDM) community attended Drazin’s presentation “Through the Eyes of a Unique Face Patient Perspective: Life with Treacher Collins Syndrome,” on Friday, October 29 in the first-floor auditorium.

 Drazin is a public speaker and executive director of Changing Perspectives, an educational nonprofit that promotes disability awareness. Drazin was born with Treacher Collin’s syndrome, a rare congenital disorder resulting in both facial anomaly and hearing loss.

During his presentation, Drazin detailed the eight facial reconstructive surgeries he has undergone, touching upon the positive and negative experiences he had with medical professionals.

“Awareness is the foundation for empathy,” Drazin said. “Oftentimes you hear it’s putting yourself in someone else’s shoes, but it’s really not what empathy is—empathy is about feeling with someone else.”

Drazin said that, to him, one of the most memorable positive experiences came when clinicians took the time to get to know him as a person before procedures.

“Finding that extra time to check that social and emotional pulse on what your patient is feeling, what components of their rare disease is affecting other parts of their life,” Drazin said.

This presentation was the fourth in the Patient Seminar Series, an ongoing event organized by Dr. Yoshiyuki Mochida, clinical associate professor in the department of Molecular and Cell Biology, where patients, family members, and legislative advocates share their knowledge of rare diseases, helping to “put a face” to oral-related diseases not often encountered.

“Treacher Collins is a rare condition which requires a team of dentists and surgeons—so this is not only giving an opportunity for students to learn about the disorder, but by listening to his story it is a very nice opportunity for young dentists to learn about team-based care,” Mochida said.

The presentation was recorded—for those interested in viewing the recording, please click here.