Diagnosing a Rare Disease: Read Allison's Story
As part of Birdshot Uveitis Society of North America's efforts to commemorate Rare Disease Day 2022 on February 28th, each Monday this month BUSNA is sharing the diagnosis story of one of our birdshot friends. As with other rare diseases, many people endure tremendous hardship before learning the name of their autoimmune disease.
Here is Allison's unique story.
Hi. My name is Allison. I'm 34 years old and live in the Memphis, TN area. My birdshot story began back in November of 2017. At the time, I was living in New Orleans, LA.
While serving tables in a restaurant, I had a very severe headache that wouldn't let up. By the end of the night I lost my peripheral vision and saw grey smoke in the corner of my left eye.
The next day I went to Vision Works, an optical retailer. After speaking with the receptionist, she immediately contacted Eye Surgery Center of Louisiana and got me in for a same day emergency appointment with John T Frisbee M.D., an ophthalmologist and surgeon specializing in uveitis and other retinal diseases.
Dr. Frisbee saw that I had a major retinal detachment and told me I'd likely need surgery. The first thing he did was inject my eye with a gas bubble to try to keep the retina flat, however, that was not successful. I was admitted to the hospital for laser surgery.
Since this procedure did not hold as expected, I was readmitted for a gas vitrectomy. Unfortunately, the retina tore and I had even another procedure that included placing silicone oil in my eye. Before long, I also had cataracts removed.
From the first visit, Dr. Frisbee worked tirelessly to determine the cause of my spontaneous retinal detachment. In time he also noticed lesions and holes on the back of my retina - the tell-tale markers of birdshot - and he suggested that I might have birdshot uveitis. I had several tests, one being a dye test. What stands out in my memory are the autoimmune blood tests. So many vials! I learned that I was positive for the HLA-A29 gene, which is common in those with birdshot.
The official diagnosis came in 2018. I was in the middle stages of birdshot uveitis. It was hard for me to accept this, and I remember being very surprised, especially due to my age.
I am so grateful that, following the detachment, Dr. Frisbee and his team were able to salvage much of the vision in that eye.
The birdshot treatment options offered to me by a rheumatologist included methotrexate and prednisone. As crazy as it may be to some, I didn't accept these options and I tried Humira for a while. Perhaps I didn't take it long enough to see if there would be improvement.
After much deliberation and consideration of what I wanted for myself, I decided to take a different approach to my care. I read a lot about anti-inflammatory diets and decided that, for me, for the time being, I would try an alternate route. I started following a strict anti-inflammatory diet and using a full spectrum CBD oil. I also started avoiding processed foods.
Fortunately, my vision has been calm and I have not experienced any vision changes or pain in quite some time. I often look into new research, and I also put my faith in the Lord Jesus Christ for anything that may happen in the future.
I'd like to share a great accomplishment of mine. I hiked the Chimney Top Trail in the Great Smoky Mountains, and I went all the way to the top wearing my BUSNA hat! I refuse to let the disease dictate my life or my happiness and I am happy to meet new friends who can relate.
Maybe someday all of us birdies can fly free from this disease.
Thank you and God bless you all
Thank you, Allison, for sharing your personal Birdshot story. We are happy for your success, and we also share in the joy of your hike in the Smokey Mountains. The BUSNA cap looks great on you!
Good luck going forward and keep on hiking!