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Medical students at the Chicago College of Osteopathic Medicine (CCOM) experienced a unique opportunity to hear firsthand from a patient living with a rare and complex disease. The amyloidosis patient panel gave first- and second-year students the chance to ask questions, gain insights beyond textbooks, and better understand the impact of delayed diagnosis.

Understanding Amyloidosis

Amyloidosis occurs when abnormal proteins, called amyloids, build up in tissues or organs. Deposits may affect the heart, kidneys, nervous system, or other organs, sometimes causing life-threatening complications. According to the , fewer than 200,000 people in the U.S. have been diagnosed, though many more likely go undetected due to the disease’s elusive presentation.

George Borrelli, D.O., Chair of Clinical Integration at CCOM, opened the session and emphasized the value of integrating patient experiences into medical education. “Amyloidosis is a fairly rare disease, and one of the challenges we see is that patients often face a significant delay in diagnosis, which can greatly affect outcomes,” said Dr. Borrelli. “Part of today’s presentation is to give you a better understanding of how amyloidosis presents in patients and why earlier recognition is so important. Opportunities like this help prepare you not only for your exams, but for real patients you’ll encounter in practice.”

Learning from a Patient’s Experience

The panel was held in partnership with the (ASB), a national initiative founded in 2019 to improve awareness and education about the disease. Since its launch, ASB has presented to more than 23,000 medical students and residents across the country. Research shows that hearing directly from patients enhances understanding and promotes earlier diagnosis.

Liz, a patient educator from ASB, was diagnosed with amyloidosis and multiple myeloma in 2017 and was initially given a life expectancy of eight to 10 years. “Well, I stand before you very much alive, and my plan is to exceed that,” she said. “Never in a million years could I have imagined that I would be diagnosed with a life-threatening blood disease and a blood cancer.” 

She credits her family, her team of doctors, participation in a clinical trial, and subsequent treatment advances for supporting her through her medical journey. “Anything from carpal tunnel to fatigue may be a precursor to amyloidosis,” Liz told the students. “Individually, these symptoms may not look like anything specific, but if you put them together like a puzzle, the picture becomes clearer. Amyloidosis hides in plain sight until you connect the dots. If my carpal tunnel tissue had been tested, my diagnosis could have come a year earlier, and that would have meant less kidney damage.”

She concluded by reminding students of the critical role they will play as future physicians. “You are the future medical professionals,” she said. “When a patient presents with puzzling symptoms, think outside the box and connect those dots. With your help, we can save lives.”

Lessons for Future Physicians

For CCOM students, the opportunity to ask questions and hear directly from a patient offered lessons beyond textbooks. The discussion highlighted the challenges patients face, and the resilience required to navigate a serious, life-altering diagnosis.

Jonah Hoyt (CCOM ’28) said the session helped him appreciate the human side of medicine. “We can sometimes become desensitized to the delivery of a diagnosis, especially one as impactful as this. Hearing the strategies she used to remain resilient, and her drive to care for herself and the support from her physicians, was really inspiring,” he said.

First-year medical student Kennedy Van (CCOM ’29) said the session brought classroom lessons to life. “It’s a great opportunity to get educated on something rare, and to hear directly from the patient rather than only reading about it in a textbook. That makes it more tangible and real for us,” Kennedy said. “It makes me think more about differentials, not just going to the most common answer first. Knowing about rare diseases will help us take better care of patients and remember that everyone’s different.”

Preparing Compassionate, Thoughtful Clinicians

By spotlighting patient experiences, the event underscored the importance of both compassion and clinical vigilance. As Dr. Borrelli noted, supplementing traditional medical education with patient perspectives helps prepare students to be better listeners, more thoughtful diagnosticians, and stronger advocates for their patients.