Experiencing the Patient’s Experience

I saw an adult patient with Wolfram syndrome in my WFS1 clinic a few weeks ago as usual. She flew in just like other patients, but she was a little different from others. Although she had low vision, she came to my clinic with a white cane by herself. Most of my patients with low vision come with his/her parent, friend, and spouse, but she was alone. She was my last patient, and after all the tests, it was around 6 PM. So, I asked her where she would stay for the night. She said she had reserved a hotel room, but she did not know how she would get there because she lost her cell phone on her way to the Washington University Medical Center. I felt so sorry, and my research lab manager reserved a hotel room for her at a hotel close to our medical center. That’s when I realized it was so hard to do anything with low vision. We tried to locate her phone via the web, but she could not see the monitor and did not remember the password for her account. We had to call multiple places to find her phone, but it was not successful. Because she could not see, it was so challenging for her to get to the hotel. So I went with her. I saw so many challenges for her. How does she find her room? How does she find a restaurant to eat at? How does she arrange a cab for the airport? How does she find the gate of her flight? How does she check her blood sugar levels without a cell phone alerting her hypoglycemia? Who will help her?

I always tried to understand the challenges of my patients. I always tried to look at the situation from my patient’s standpoint, but I think I failed to do so. I called a few patients who I knew well on that day and shared what I felt. I am so sorry. Please forgive me.

Fumi Urano