Rare Disease Day 2026: Nicola's Birdshot 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 Nicola!
It was May 2024 that I first realized that those black floating dots were more prevalent than before. I was walking along a Scottish beach with a friend, and she was pointing out some birds in the grey sky. I realized there were lots of black specs …. none of them birds!!
I then developed a “haze”. Everything looked like it was in soft focus, not blurry just hazy. I also noticed I was struggling to drive at night - the glare from the oncoming traffic was blinding. I mentioned all this to my ophthalmologist during routine eye exams and was told it was an age thing, something quite common at this time of life.
I got new glasses but within a month I was struggling to read newspaper text. Then in April 2025 while on a business trip to London I realized I really couldn’t see things I’d been able to see a couple of months earlier. I couldn’t see the tube map or read platform signs, I felt disorientated and had to pay close attention to the placement of my feet when walking at night - so much so that I walked into a tree!!!
Enough was enough- when I arrived back from that trip I went straight to my local eye emergency care department and stood at the reception desk and simply said, “I’m losing my sight!”
Two weeks of eye exams and tests followed and on in May 2025 my eye consultant invited me into his room and told me he was 99% sure I had a rare eye condition called Birdshot Uveitis. It was not curable, but it could be managed with steroids and immunosuppressants. It was very advanced and the damage already done to both my retina was probably irreversible.
As part of the diagnosis and to rule out any other “mischief” he set me for a head and body CT scan. A week later I was called back - something was seen on the CT scan - and I was being referred to the breast cancer department.
Another 2 weeks of ultrasounds, biopsies and MRI scans and another diagnosis. Stage 1 invasive ductal carcinoma estrogenpositive in my left breast requiring surgery and radiotherapy. The thing was I’d had a clear routine screening mammogram 6 months before and I was taking HRT.
If I hadn’t been diagnosed with birdshot and my eye doctor had not been so thorough in his testing, sending me for a CT scan - I would have continued taking HRT for a further 18 months until my next routine mammogram. By that time, who knows how far the cancer would have spread.
My eyes have responded well to corticosteroid (now on 4mg/ day) and twice a month injection of a biologic. The inflammation has subsided and my retina are not as scarred as my eye doctor had expected. My eyesight has returned to what it was before the acute episode. My breast surgery took place in August 2025 followed by radiotherapy in October.
While I would not wish to have an incurable autoimmune disease, having it has led to the early detection of a cancer that, if left undetected, could have killed me. Getting birdshot saved my life!
Thank you, Nicola, for your heartfelt birdshot story. We are grateful that your cancer was discovered in a timely manner and wish you good health!