Summary by Marisa Truong.
For class Friday, March 23rd, 2012 we had the unique opportunity to invite a patient family that we have been working closely with to come out and speak to the students. Our friends, Tylor White-Richardson, Jenn White and Brian (Sy) Simon were gracious enough to drive out from Iowa to come visit our class and talk to the students about their journey with Tylor.
The visit started off with a casual lunch with the family and a quick tour of Notre Dame’s Museum of Biodiversity. It seemed as though Tylor really took a liking to the giant dinosaur head in there! After lunch, Jenn (Tylor’s mother) gave a brief lecture about their journey with Tylor, focusing on the years struggling to find a diagnosis. It was a touching story that really highlighted the struggles a family goes through while trying to find a diagnosis.
This added a personal dimension to the students’ learning experience and taught them how to empathize with patients and to keep that in mind in the future when they become health care providers. Jenn and Sy emphasized to the students to remember that “they are also people” in the doctor’s office, yes they may need to go over medical protocols, but as they are walking out of the office with the patient it’s okay to talk about sports, current events, or anything else of interest. It really helps the patient develop a deeper level of trust with the physician as well as puts the patient more at ease. They also reminded the students that while they are treating a patient, they need to relay information in a way that is unintimidating and easy for the patient to understand. Many patients are overwhelmed with medical jargon and do not even know where to begin asking questions if they don’t understand. It is most helpful to patients if the physician is patient and thoroughly descriptive when explaining a situation.
We would like to thank Tylor, Jenn, and Sy for all of the work they have done with us for Rare Health Exchange as well as taking the time to come out and visit us and share their incredible story. They have done wonderful work to bring awareness to the Niemann Pick Disease Typce C community. Check out Tylor’s blog to see more pictures and read about his story!