BUSNA welcomes Claudia in commemorating Rare Disease Day 2024

In commemorating Rare Disease Day, we welcome Claudia as she shares her Birdshot diagnosis story. Rare Disease Day 2024 is being observed on February 29, the rarest day of the year. Birdshot Uveitis Society of North America will be featuring diagnosis stories of birdies throughout the month.

Here is Claudia’s story….

Hi. My name is Claudia and I am a retired schoolteacher from the Chicago area. I have lived in Florida since 2008.

Sickness has never been a part of my life. I’ve always been blessed with great health and a very active, engaged, lifestyle.

I was diagnosed with Birdshot on May 23, 2023 at the age of 71. It took almost a year before my vision was stabilized, but the thought of losing my sight, my independence and my quality of life was terrifying, especially in those early days. The Birdshot Society of North America, and the FB group Birdshot Uveitis USA, helped alleviate many of my fears.

My first serious vision issues came shortly after fall during a severe case of Covid in August, 2022. I bruised the area around my left eye and immediately started experiencing bright rotating lights in that same eye.

During a series of at least NINE visits to a local ophthalmology practice, I was diagnosed with dry eye (no treatment) and experienced deteriorating vision. I was told I had allergies, and since I had had (successful) cataract surgery the year before, they performed YAGGs on both eyes. YAGG is a laser surgery performed to help improve clarity of vision following a cataract surgery. 

As my vision continued to worsen, one ophthalmologist saw inflammation in the back of my right eye and prescribed Ketorolac and Predinsolone eye drops. A week later the inflammation became much worse and affected my left eye as well. Finally I was referred to a retina specialist.  

On May 9th, 2023 the retina specialist tested me and found Uveitis, Vasculitis and Cystoid Macular Edema. He was sure it was an auto-immune disorder and ordered a battery of blood tests. I was soon diagnosed with Birdshot Chorioretinopathy and was prescribed 40 mg Prednisone to take with 4 drops daily of Prednisolone.

I was referred to Dr. Albini at Bascom Palmer Eye Institute. At that point my vision was 20/40 in both eyes, but it plummeted to 20/80 before I was able to get my appointment at BPEI. Luckily, by the July appointment, it had returned to 20/40.

Dr. Albini added 2000 mg of Cellcept to my growing list of prescription drugs. 

Since then, my Prednisone has been tapered to 10mg, and I’ve had injections in both eyes – steroids in the right and Ozurdex in the left. The Uveitis, Vasculitis and Cystoid Macular Edema finally responded to the Ozurdex. My vision is blurry but stable at 20/40. Because of the improvement with the Ozurdex, Dr. Albini is considering Yutiq implants in both eyes.  

I was lucky. The entire process from first symptom to diagnosis was only eight months!

I hope my story encourages others who are managing birdshot uveitis.

Thank you Claudia, for sharing your story. We all wish you well on your birdshot journey!