Meet Melissa from Newfoundland, Canada commemorating Rare Disease Day 2024
We welcome Melissa as she shares her Birdshot diagnosis story for Rare Disease Day 2024. It is being observed on February 29, the rarest day of the year. This month, Birdshot Uveitis Society of North America is featuring diagnosis stories of people with birdshot uveitis. This autoimmune disease can be challenging to diagnose and treat.
I am Melissa, and my Birdshot journey began in July 2022 when I was 38 years old. I had a routine eye exam in St. John's, Newfoundland, Canada. The optometrist did an OCT and then asked me if I had ever taken any steroids for my eyes. I looked at him puzzled, and asked why. He turned the monitor towards me and showed me an image of hundreds of cream coloured lesions on each eye. I replied that I hadn't ever taken steroids, and with that a referral was sent to a local ophthalmologist for a "possible Birdshot diagnosis".
I live and work in a small isolated town in Labrador which is on the mainland portion of the province Newfoundland and Labrador. I am located almost 2000 kilometers away from the nearest ophthalmologist. There are only three flights each week out of my town, so my visits to the ophthalmologist usually mean I have to miss multiple days of work and coordinate appointments with the weather and flight schedule. It can be an ordeal!
As I waited for my first ophthalmologist appointment, I began to research everything I could find on "Birdshot" and admittedly, it did not take me long to feel as though I had read it all and I was terrified. Was I going to go blind? I have three children and my thoughts instantly went to all of the milestones I will no longer see in their lives. It was then that I found BUSNA and first connected with board member, Josette. She was so kind and patient as I ran through my anxieties and concerns. She reassured me that there were many treatment options available and then told me about The Gathering happening that same day! I attended my first virtual gathering in 2023 just days after my official diagnosis. It was refreshing to meet dozens of people living with the same disease and uncertainties as I was. One of my key takeaways from that first zoom meeting was the positivity expressed by each member. As everyone took a turn to introduce themselves and speak to their new treatment plan, or changes in vision, there was no doom and gloom. Everyone was supportive and helpful to one another. I loved it! I have since been in contact with some fellow Canadian birdies. Mari, another board member, has been a wonderful friend and supportive as I navigated challenges in care early on.
I am HLA-A29 positive, and have some visual disturbances. I have sensitivity to natural and fluorescent lights, many floaters, and a blurred spot in my central vision in my right eye, and a flashing light in the central vision of my left eye. However, all of these concerns are rather minor as I am still fortunate to have 20/20 vision (with glasses) and no inflammation. I am not currently taking any medication, and aside from a brief round of prednisone at diagnosis, I have not had any medical interventions due to Birdshot. I have not seen a retina or uveitis specialist to date. Accessing those resources has been challenging thus far due to my location, but I continue to search for a specialist that will see me.
I am a Music Specialist in a small K-12 school and also working my way through a Masters of Social Work degree focusing on clinical counseling. I make small accommodations to my daily life, like wearing sunglasses in natural light, and turning off the fluorescents at work whenever I can. I am confident I will continue to travel and see the world with my husband and children for many years to come.
March 6th will mark 1 year since my official diagnosis and my outlook is bright! I have regular checkups with my ophthalmologist and my eyes are remaining stable. As we take a moment to recognize Rare Disease Day, may we also reflect on the community that has brought us together. Thank you to BUSNA for your continued support and hopefully I will meet some of you at Birdshot Day in April.
Thank you Melissa, for sharing your story. We hope that, some day, you'll be able to meet with a uveitis specialist. We wish you well on your birdshot journey and hope to meet you soon!