Q&A with Jeremy Flanagan
Jeremy Flanagan is an Australian medical student who was paired with Usher Syndrome Ireland for Rare Beacon's Student Voice competition. Here we ask him a few questions about his learning experience.
Jeremy, you entered the Student Voice competition - can you tell us a little more about this competition?
Yes, of course! The Student Voice competition is an international essay competition open to medical students who have the opportunity to learn about a rare disease from a patient group representative from Ireland or the UK. I was paired with Carol Brill from Usher Syndrome Ireland to learn more about Usher syndrome. I was fortunate to listen to her story as well as others' she helped organise for me to hear, along with hearing from Emily Shepard of UsherKids Australia. This year, there were three essay themes to choose from all exploring the psychosocial impacts of rare diseases: diagnosis, access to therapy/research, and navigating the healthcare system. Following these conversations, I decided for my essay to write about the diagnostic journey for Usher syndrome patients and their families.
What did you learn about Usher syndrome?
In preparation for my initial meeting with Carol over Zoom, I did a lot of background reading about the types, subtypes, pathogenesis, and the diagnostic criteria for Usher syndrome, but I really didn’t know what to expect. During my medical studies, I had learnt about patient-centred care and the importance of the patient experience, but there were many things I wouldn’t have appreciated without listening to the stories from the patients themselves.
Namely, how both hearing and vision impairment can affect daily living and interactions with healthcare services such as, being unable to see or hear electric cars approach at night, or the difficulty of communicating with face masks. Many things, that would be manageable with a single vision or hearing impairment, often becomes far more difficult with both impairments. I was also unaware of how access to different healthcare services, technological advances and supports available to patients and families can vary meaning that people with the exact same Usher syndrome diagnosis may have had vastly different experiences during diagnosis and beyond, depending on when and where they were born.
Going forward, having written your essay about what you have learned about the challenges of getting an Usher Syndrome diagnosis, how will this influence your medical career?
Since I spoke with Carol, I have continued to reflect at length about what it would be like to live with Usher syndrome as a patient, and/or as a parent, and how I would integrate that learning into my future work as a medical professional. To be honest, I’m not sure yet how this will influence my career, but what I will continue to do is learn from the patients, and patient advocates, about the best way to treat and assist patients who have rare diseases. I think that is a vital first step for any rare disease such as Usher syndrome, listen to the patient – and also to facilitate patient and family access to relevant support groups as soon as possible.
I also learned that Carol is an avid golfer Carol, so when I (eventually) graduate medical school, I’ll have to come to Ireland for a round with her!
One last question, a bit personal but, how does an Australian get such an Irish name?
My ancestors must have gotten lost on the way to Boston!
