Annie’s story: the Birdshot Uveitis Society
In search of community
22 March 2023
Annie Folkard has been a patient at Moorfields since 2004, when she was first diagnosed with a rare eye disease called birdshot chorioretinopathy (or birdshot uveitis). Since then, she has founded the Birdshot Uveitis Society to be a place of support for anyone living with the condition.
At the time of Annie’s initial diagnosis there was a lack of research dedicated to the condition.
It is thought that the first case of birdshot uveitis was described in 1949. However, it wasn’t until 1980 that two ophthalmologists coined the term ‘birdshot’ to describe the scatter pattern or the orange to cream-coloured retinal spots observed in patients with the condition.
What is birdshot chorioretinopathy?
Birdshot is a rare form of uveitis. Uveitis happens when there’s an inflammation of the uvea, the part of the eye that provides the retina with most of its blood supply.
Diagnosis and treatment
Among the initial signs that there was something wrong with Annie’s sight was realising she couldn’t thread a needle. Annie has a background in Fashion and Textiles (and, more recently, quilting), so as a creative person, this was an extremely discouraging realisation for her.
…it might not sound very much to you, but it was quite frustrating because I like to sew and I’m quite creative.
The initial treatments that Annie received upon her birdshot diagnosis had several disruptive side effects.
There is no one treatment that suits all people with birdshot, however it is usual for birdshotters - people with birdshot chorioretinopathy- to be treated with high doses of steroids to control the inflammation in the eye.
I have had to take medication to control my cholesterol and also blood pressure pills and I’m sure I wouldn’t be taking them if I wasn’t taking these other medications to keep my eye inflammation under control.
In Annie’s case, the earlier birdshot treatment had many side effects, such as depression, anger, high cholesterol and high blood pressure. Annie, as well as other birdshotters that suffer from side effects, has had to received additional medication to manage the side effects of the steroids.
What causes birdshot?
The exact cause is unknown, but it is thought to be an autoimmune disease.
Birdshot often starts with floaters and/or blurred vision. Other symptoms include: night blindness, problems with colour vision, sensitivity to bright lights, distortions in vision, pain in the eyes, loss of depth perception and/or peripheral (side) vision. It may also be possible for an ophthalmologist to see cream or orange oval-shaped spots in the retina
Birdshot Uveitis Society
Due to the lack of knowledge about birdshot, Annie co-founded the Birdshot Uveitis Society (BUS) in 2008.
When I was first diagnosed there was very little research being done and nobody knew anything about the condition and that was part of the reason we set up the Birdshot Uveitis Society.
BUS is not only a patient support group for birdshotters, but also a charity with the mission of raising the profile of the rare eye condition.
The idea of gathering a core community of patients with birdshot meant that it became a lot easier to find a place of support for anyone dealing with the condition.
I was told there were very few patients in the UK [with birdshot] and we discovered that there are at least 600, as opposed to 25 or 30. So with the help of a patient society like us, it has helped the eye research community to take up uveitis and research it.
According to Annie, a patients’ society like BUS has filled in a gap in the eye research community. There has been progress in the last 10 years, and knowing there is a place to meet and talk to people with birdshot meant that more research is being done about the eye condition.
The birdshotters’ community is very optimistic that in the future there won’t be people losing their sight needlessly. They believe and hope that other birdshotters will get treatments that don’t make them ill, and life can continue as normal.
It’s great that now it’s getting more airtime and people are more familiar with the problems that those who have this condition are living with.
Annie’s current treatment no longer has many severe side effects. She believes she has been very fortunate in being able to receive treatment that has successfully maintained her vision. Annie affirms that “the most important thing is to keep your vision, maintain it, and if you have to suffer a little, it’s worthwhile”.