Rare Disease Day 2026: Carol's Story

February 28th is Rare Disease Day. To commemorate the event, Birdshot Uveitis Society of North America is sharing a series of “diagnosis and treatment stories” as told by several members of our birdshot community.   

Today we welcome Carol!

My experience with birdshot uveitis has spanned 22 years. I consider myself quite fortunate to have lived in Atlanta where eye care is excellent and where there are abundant resources for diagnosis, treatment, and monitoring. I also am incredibly lucky to have established a relationship with an excellent specialist prior to my birdshot symptoms. I now am in the monitoring phase, with my birdshot “quiet” for several years.

My journey began with a retina tear. I visited my ophthalmologist when the tear symptoms began (floaters and flashing), and fortunately his practice included a retina specialist. The specialist repaired my tear with laser treatment, and all was well.

Many weeks later I again experienced floaters and flashing. I followed up with the retina specialist. He examined me, performed tests and then told me he suspected a different issue. He confirmed his suspicions with the HLA-A29 test and had discussions with a few birdshot experts. I feel quite fortunate to have connected with this highly skilled doctor who, even though he had only seen birdshot while in training, could recognize it. He sent me toa specialist who had in-depth experience with birdshot.

At the time of diagnosis, I held a position in a large technology company where I was frequently making presentations and traveling. My initial symptoms quickly grew to light sensitivity, and for a while it became impossible for me to see slides that were projected on a screen. I also had difficulty with night vision. It was quite a stressful time, but at least I wasbeing cared for by physicians who had in-depth knowledge of the disease.

My treatment was an oral corticosteroid, which I took at high and tapered doses for some time. It worked well for me and was my drug of choice after trying alternatives. My retina specialists worked hard to monitor flare-ups,prescribe appropriate doses, and keep me on low dose maintenance to try to keep the flare-ups away.

Now in my early 70s, I haven’t had a flare-up in many years. I’ve been told that the immune system may weaken with age and that it may help with autoimmune illnesses. I have retired to Winston-Salem, NC. My doctor connected me with a wonderful specialist here. I see my new doctor once a year and my Atlanta doctors once a year (6-month intervals). One big challenge for monitoring this disease is the availability of anElectroretinogram (ERG) machine, but I generally have at least one ERG per year.

When I was going through my initial years with active birdshot, no one had heard of it. It was a lonely diagnosis. We’ve come a long way inunderstanding the disease and in providing more awareness of it, but I still experience puzzled faces whenever my birdshot comes up.

Thank you, Carol, for sharing your birdshot story! Good luck in North Carolina and we wish you well with your birdshot uveitis.