Rare Disease Day 2026: Leslie'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 Leslie!

I was diagnosed with birdshot two years ago, after being sent for testing. It turns out, my eye doctor hadn’t ever seen uveitis. He thought I had syphilis because of the inflammation in my retinas! 

I am very thankful he sent me to a specialist. After an entire day of tests, I was told I had “a very rare eye disease and would need to take risky medications for the rest of my life.”  It was all very shocking, to say the least. I sat in the parking lot and just cried. 

Then I looked up the medications I’d been prescribed. I had so many questions and ended up having a long telehealth appointment with the retinologist. After that, I felt better in terms of treatments and prognosis. 

My eyes responded very well to my first immunosuppressant, but the rest of me did not.  I had stomach issues, constant nausea, hair loss, and a few psychological symptoms. After switching to a biologic medication, I started doing much better. 

I have improved every 3 months for 2 years but recently had a minor setback. I am now on a different immunosuppressant. So far, so good, and there are no side effects. 

In addition to medication, my retinologist advised changing to a plant-based diet. She had completed a study that anecdotally showed improvement in those who had followed a plant-based diet. 

I feel good in general and have tried hard to “do my part” in terms of lifestyle factors. Well, except for exercise. I haven’t done so well with that!! 

The best part is that I have no vision loss, despite my most likely having had undiagnosed birdshot uveitis for 10-12 years. My inflammatory markers are now down from 2+ to trace/+. 

I have much to be thankful for. 

I’m looking forward to hearing everyone else’s stories! 

Thank you, Leslie. It must have been a rough start for you, but we’re glad to know how well you are doing now!

And thanks also to members of our community who are sharing Leslie’s story on social media. It’s important for us to increase awareness of our rare disease.