Patient Panel Provides Medical Students Insights into Living with a Rare Disease
Chicago College of Osteopathic Medicine students gain firsthand knowledge about amyloidosis
- IL - Downers Grove
(From left): Ozzie Giglio and George Borrelli, D.O., Chair, Clinical Integration, Chicago College of Osteopathic Medicine (CCOM).
The Chicago College of Osteopathic Medicine (CCOM) held a patient panel about amyloidosis, a rare disease where abnormal proteins build up in different tissues and organs. The patient panel was an opportunity for medical students to increase their awareness of amyloidosis and hear a patient’s experience living with the rare disease. According to the Amyloidosis Foundation, there are less than 200,000 people in the U.S. who have been diagnosed with amyloidosis.
George Borrelli, D.O., Chair, Clinical Integration, CCOM, welcomed the audience to the patient panel and discussed the importance of the supplemental learning opportunity for the students. “It gives you an opportunity to not only learn about a disease, but to get an account from a patient who has actually gone through the situation.” Dr. Borrelli elaborated, “The earlier this disease is diagnosed, the better the outcomes are. For so many years, this disease has been an enigma, difficult to diagnose, and slipped through many clinicians’ fingers.”
Medical student Kelly Brake (CCOM ’27) said, “It was nice to hear a patient account during our coursework years. It’s a good reminder of the challenges that patients face in healthcare.” She also expressed her gratitude for CCOM’s enrichment of classroom learning with experiences like this event.
Ozzie Giglio, who is living with amyloidosis, visited Midwestern University and shared his experience with the rare disease. He was diagnosed with amyloidosis in 2015, during a cardiology exam as a part of a health program that he attended with his wife. The cardiologist was trained to check for amyloidosis. Mr. Giglio said he felt fine overall and did not have any symptoms that did not have an alternative explanation as someone who served in the military, is a lifelong athlete, a volunteer firefighter, and a motorcycle enthusiast. “My performance levels running and swimming were going down, but at 55 years old, I felt like I was going to have some degradation in the levels, so I didn’t think anything of it.” During his regular exams in the military, it showed he had an enlarged heart, but he was told that was normal for an athlete.
“I did not have signs of any cardiac failure or any impact on my body that was notable,” he said, but added he experienced bilateral carpal tunnel syndrome five years before the Mayo Clinic visit. In some patients, bilateral carpal tunnel syndrome is an indication of amyloidosis. “There are many signs of amyloidosis if people understand and know what they are, it’s easy to find.” He continued, “This was an incidental finding by a very curious doctor who saw a very small thread and pulled it, as I was asymptomatic at the time. I was so fortunate because this could have gone on.” Mr. Giglio shared that some people do not find out that they have this rare disease until the symptoms are debilitating.
Upon diagnosis, Mr. Giglio was given about five years to live. “I suddenly realized the gravity of the condition. At that time in 2015, there really were no therapeutics, much less a cure for the disease.”
Dr. Borelli commented that a patient’s reaction upon a diagnosis, like most people, would be to look up the condition on the internet. “Imagine being in that situation and finding out the average life expectancy is five years. Everything we say to a patient has a huge impact, especially in a situation like that,” he said.
Following his diagnosis, Mr. Giglio conducted his own research, including an article written by a doctor about research in the field of amyloidosis, which he brought with him to an appointment for a heart transplant, the recommended course of treatment at the time. Instead of undergoing a transplant, Mr. Giglio became part of a medication research study and remains on two medications to manage his rare disease. He emphasized the importance of the good bedside manner he received from his doctors. “I think to be a terrific doctor, you have to be a good human being because they really took interest in me as a patient.”
Medical student Adeelah Shamshuddin (CCOM ’28) reflected that the program was insightful, especially coming in as a first-year medical student. “It was my first experience of hearing a patient’s experience and very valuable to hear his story. As a future physician I want to make my patients comfortable and be a safe space for them,” Adeelah said.
Mr. Giglio also had advice for the future doctors, “I really do believe amyloidosis is far more prevalent than anyone realizes. If you are able to look for this as you go through your career, then you actually are going to save people’s lives and the quality of their lives.” He continued, “This is a disease that if you diagnose early combined with the therapeutics that have been developed today, you will change lives.”
“I was so fortunate that this was diagnosed early, and these medications were available to me because I’m leading a very normal life for all practical purposes. I could have easily gone along for a long period of time until I was my age today, where I was having severe heart attack symptoms,” Mr. Giglio said. Currently, he maintains an active lifestyle.
Incorporating a variety of additional learning opportunities, such as the panel about the rare disease amyloidosis, is a central aspect of the Midwestern University’s commitment to educating the next generation of healthcare professionals.
