A Q&A with med students helps to keep the ‘patient’ in patient care

One thing that’s important to me as a parent raising a child with a rare genetic condition is to be able to help share the human side of rare disease. I enjoy having the opportunity to educate friends and family about Alagille syndrome, and that advocacy work includes writing this column.

So when my family was offered the opportunity to do a Q&A session with a class of medical students at our local college, I jumped at it.

When my son Finley was diagnosed with Alagille a few months into his life, it frustrated me that so much of the information available was scientific and impersonal. Obviously, when you’re learning about a genetic syndrome like Alagille, you expect that kind of information, but I wanted to read something more personal, like glimpses into what a typical day might be like for my child. I wanted something more than tests, labs, doctor visits, and hospital stays.

But that kind of resource proved hard to find, so my wife, Dani, and I decided to create it. We started on social media, first with an Instagram page Dani set up to share regular moments about what it was like to raise a child with Alagille. We shared the highs and the lows, and along the way, we connected with families all over the world, which helped set the stage for me to write this column.

The main attraction

Finley is fortunate to have had the same two gastroenterologists throughout his life. They were there for his initial hospital stay at our local children’s hospital, and they have been with us every single step of the way. From day one, I have felt that Finley wasn’t just another number in their care.

Finley Sandstrom recently took part in a question-and-answer session with a class of medical students. (Courtesy of Jay Sandstrom)

Recently, one of them asked Dani and me if we’d be willing to participate in a Q&A session with medical students at the local college. The intent of the session was to expose these future healthcare providers to the patient perspective. In this instance, it would also be their first exposure to pediatric care, and with Finley coming along for the ride, he was definitely ready to be the star of the show.

I love these opportunities to share our story, even when it might be hard to hear and difficult to relate. Each time I share our story from the neonatal intensive care unit or Finley’s diagnosis journey, it’s a chance to help someone else along in their path.

A glimpse of the patient experience was exactly what I was looking for after Finley’s diagnosis, and I enjoyed getting the chance to share it with the students. And Finley more than made his mark, too, whether it was by having all eyes on him as he took his turn at the microphone, by riding his scooter all around the room, or by loudly farting during one of my answers. I think those students will remember Finley not just as an example of Alagille syndrome, but as a young child who happens to be living with a rare disease.

I am thankful for doctors like ours who make patient care their focus. I have connected with so many families in the Alagille community, and I’m happy to share positive stories about my son’s care.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.