The Damian Project:

Patient Presentations

Patients and their family members can be highly effective teachers. They talk about symptoms, living with disease, their diagnosticjourneys, and feeling isolated. They recall the challenges of navigating a complex medical system. Whereas doctors lecture about facts anddescribe clinical cases, patients and families have lived an often poignant narrative, and the research is clear – storytelling is a very effectiveteaching tool. We remember stories better than we do facts.

In memory of a young man who courageously fought to live with his disease, and in honor of his parents who continue to share their insightlearned from their son, GMCE presents a patient-as-teacher educational series, proudly named The Damian Project.

Damian was born with symptoms that included poor feeding and low muscle tone. Soon after birth, he suffered his first “metabolic crisis” inwhich his blood became very acidic (metabolic acidosis). For months Damian was sent from doctor to doctor; his parents were questioned,disbelieved, and dismissed. He was eventually diagnosed with pyruvate dehydrogenase deficiency, a rare defect in his cells’ ability to produceenergy for ordinary biologic functions.

Damian’s life over the next 27 years was complicated by medical and developmental challenges. Over time, his parents became strong andvocal advocates. They saw the need for teaching physicians and other professionals about their son and his metabolic disorder.

Although Damian has since passed away, his parents have continued speaking to medical audiences, offering a personal, insightful, andpowerful perspective. Their continued outreach provides a compelling learning opportunity for young doctors who can hear about the patientexperience in a dramatic and non-confrontational forum.

Inspired by Damian’s story and his parents’ efforts, GMCE is developing a library of patient presentations, representing a widerange of metabolic conditions. This unique collection provides a face and a voice to the patient community, introducing physicians andtrainees to patients they might not have seen in their own experience. The impact: GMCE believes those who have the chance to observediagnosed patients are more likely to recognize new cases.

Patient presentations are included in all GMCE programming to enhance the learning experience, coupled with a brief medical overviewof the illness:

• Live conferences

• Online eLearning modules

• Online electives for subspecialty residents

• Online “Walks through the Metabolism Clinic”

• Outreach to medical schools, specifically biochemistry courses