Rare Disease Day 2026: Susan'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 Susan!
My birdshot uveitis was diagnosed in December of 2021.
My eye issues started with a sudden onset of flashing lights, blurred vision, and swollen/leaking eye vessels. I consulted a retina specialist who told me that I had either a brain tumor or ocular lymphoma.
He ordered a complete infectious disease, malignancy, and auto immune screenings. I had 27 tubes of blood drawn, a CT chest, and an MRI of brain and eye orbits with and without contrast.
At the last minute my doctor decided to order an HLA-A29 blood test but said not to worry, because he was testing for an extremely rare auto immune disease that affects the posterior eye. He said to me, “But you couldn’t be unlucky enough to have that be positive.” That last test was the only positive result I received. All other studies were negative.
My birdshot diagnosis was confirmed. I was referred to a birdshotspecialist and was told to also find a rheumatologist. I was advised to first update my vaccines, but my birdshot symptoms soon worsened. That’s when my two doctors decided to start treating my birdshot symptoms.
I was prescribed both an immunosuppressant and a biologic. The first few years are a blur of medication adjustments and FA scans. The worst part is that I’ve been on various dosages of corticosteroids to control several flares. I found out that I am a steroid responder.
My vision has been fantastic with my current medication regimen. I have perfect peripheral vision, can see all colors, and I have20/20 vision. I can also drive at night. I have, however,developed bi-lateral posterior vitreous detachment (PVD) and have gotten used to seeing large floaters and mini flashes. Wish me luck as I try, for the 5th time, to get off the oral steroids.
In conclusion I have learned several things:
· I am stronger than I think.
· This disease has no rhyme or reason.
· What works for me doesn’t necessarily work for others.
· I don’t overthink every visual disturbance.
I am fortunate to have a BS ophthalmologist and a rheumatologist who work together to manage my meds. I am also thankful for BUSNA because I no longer feel alone.
Good luck to all. It’s not an easy ride, so buckle up. Remember...YOU are stronger than you think.
Thank you, Susan. It has been an ordeal for you, but we are happy that you have maintained such good vision. Wishing you well on your birdshot journey!