Rare Disease Day Spotlight

Today, as part of Rare Disease Day 2025, Birdshot Uveitis Society of North America welcomes Christopher Comfort as he tells his birdshot story. Like too many of us, his months-long diagnosis journey has resulted in a degree of vision loss in one of his eyes.

Birdshot uveitis is a rare autoimmune disease of the eye. BUSNA is a nonprofit organization that supports the birdshot community and various birdshot uveitis research projects.

Hi everyone! My name is Chris Comfort. My BSCR story started in 2022.

I had classic birdshot symptoms but kept attributing it to stress. I figured it would just go away. By mid-December I realized they were not going anywhere, and I needed to see my optometrist.

When I finally saw the doctor in January 2023, I realized how bad my eyesight had become. I couldn’t read anything on the Snellen chart with my right eye and my left was starting to be hazy as well! The doctors were baffled.

I was soon referred to a neuro-ophthalmologist. The specialist was great and after many tests he saw some “cells” in my eyes. He recommended an MRI of my brain to rule out a CVA or a brain tumor and he also referred me to a retina specialist. I am a nurse and to be honest, I had no clue how complex our eyes were until these vision issues started.

The visit to the Retina specialist was an experience with dozens and dozens of people lined up in the waiting room. Also, I’ve never had my eyes dilated before till that day and wow, that was an experience. After a series of tests I was told, "You have bilateral uveitis. This is serious and you need to get a series of tests right now at the emergency room.”  The doctor was convinced that I had cat-scratch fever.

In February I was placed on antibiotics and eye drops. I was praying for the best until a random blood test came back positive for HLA-A29. It was February 8th,2023 and at that point everything started moving very fast. I was placed on a heavy steroid taper and sent to yet another specialist.

I am lucky to live in New England between Boston and New York. I’m very close to a lot of specialists. My co-worker and friend happened to previously work with Dr. Foster at MERSI (Massachusetts Eye and Research Institute) and she helped me get an appointment at this amazing place!

Dr. Foster was so caring and concerned. I remember him saying, "Let me ask you, how much cleaning have you done lately?” This made me feel so much better. The steroids have given me so much energy and people who know me, know how neurotic I am with cleaning!

I was immediately placed on Cyclosporine, then weeks later Cellcept. With every attempt to taper the steroids, the vasculitis crept back. We then discussed Remicade and other treatment options. I am currently on many immunosuppressants - Cellcept, Cyclosporine and Remicade IV.

Unfortunately, my central vision in my right eye has not returned. Thankfully it did in my left eye. Every day is a struggle. I have so many triggers and it has been a hard time for me to adjust my day-to-day life. I am somebody who doesn’t stop from the moment he wakes up till it’s time to go to bed.

I’ve had to learn to listen to my body, I can no longer say yes to working an extra shift and I definitely say no to “Let’s have one more drink.”. There are days I feel like I am constantly wiping my eyes thinking there is something in them, but no, it’s just the Birdshot.

I work on a respiratory unit at a hospital and considering the significant amount of immunosuppressants I am on, I have had serious conversations about continuing this work. Being a nurse is what I was born to do. The doctors advise me to be extra cautious but to continue doing what I am doing.

I am grateful to have a great support system. I frequently go to concerts (though now I am very strategic about where I am sitting!). Yoga and calisthenics help me slow down and take time to take care of myself rather than constantly being on the go. I have a great therapist, and I journal a lot! I am now a professional at getting my eyes dilated. 

I was lucky to be able to attend the Birdshot Day 2024 last April in Philadelphia. I met some wonderful people and realized I am not alone with this very rare disease. Thank you BUSNA, I am so appreciative of this group; more than you know!

Chris, we are grateful that you have found uveitis specialists who are helping control the progression of your disease. Thank you not only for sharing your birdshot story, but for all you do in your capacity as a nurse. Keep on doing what you were meant to do. Wishing you well!!