Rare Disease Day Spotlight
Today, as part of Rare Disease Day 2025, Birdshot Uveitis Society of North America welcomes Rod Roblin and his birdshot diagnosis story.
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.
Hello. My name is Rod Roblin. I worked as a Rehabilitation Consultant in the Toronto area for 25 years and recently retired at the age of 65.
In 2008, my optometrist noticed retinal floaters, which I was also able to see. The following year, when the floaters became thicker and heavier, I was referred to an ophthalmologist. That’s when I was diagnosed with Birdshot Retinopathy.
My initial course of treatment included eye injections, Prednisone, Cyclosporine, and Cellcept. According to my low vision specialist, the dosage was “aggressive”, but I was a Steroid Responder and didn’t do well with the injections. My Intra-Ocular Pressures spiked to dangerously high numbers - 48 and 50 - and I experienced some optic nerve damage. I’ve been told that optic nerves are supposed to be flat and clear, but mine are wrinkled and opaque.
We tried a steroid treatment again in 2012, following cataract surgery. The implant, Retisert, released a daily dose of a steroid and lasted about 3 years. Although it helped my birdshot, it again raised my IOP’s to dangerous levels.
I was then referred to a Glaucoma specialist who diagnosed me with Steroid-Induced Glaucoma. For the next 5 years I underwent multiple surgeries and I presently have 4 Ahmed Valves, 2 in each eye. Thankfully that has corrected that problem, but it took a long time.
I have been on Humira (bio-similar) for the past 3 years. I also take Duerzol 1-2 times per day for retinal swelling.
The residual and permanent impairment that I am dealing with includes Chronic Photophobia (light sensitivity), Chronic Dry Eye (Ocynux works well for that), and a never-ending stinging in my eyes, for which I use drops. I have not driven at night for 10 years.
How have I coped with all of this?
Because of photophobia, I always wear clip-ons indoors. I also joined a self-help group and I exercise some. My life experiences have taught me that social interaction and physical activity are key ingredients in my overall well-being and general disposition.
Thank you Rod! Like so many of us, you’ve been through an ordeal but you’re making the best of your circumstances. We wish you well as you continue your birdshot journey!