Amanda and her husband Stephen from Leeds are walking 14 miles in the Eye to Eye walk as part of the Birdshot Uveitis Society team.
Amanda suffers from birdshot chorioretinopathy, also called birdshot uveitis. This is a rare form of chronic posterior uveitis, with around 600 diagnosed with it in UK. It affects both eyes, is progressive, usually painless, and potentially blinding if not treated. It is thought to be caused by the body’s immune system attacking the eye tissues, causing inflammation. The name ‘birdshot’ comes from the scattered white spots seen when the retina is examined. These spots resemble the pattern that birdshot pellets make when they are fired at a target.
Birdshot is usually treated with medication taken by mouth (corticosteroids and immunosuppressant medicines) because eye drops do not reach inflammation at the back of the eye. Treatment aims to control inflammation and put the condition into remission, but this is tricky: the inflammation may flare up and it can take years to achieve remission.
Amanda and Stephen are part of ‘Team Birdshot’ who are supporting the Eye to Eye walk because they want to help raise the profile of birdshot uveitis and make a difference to the important work carried out at Moorfields Eye Hospital. They are eager to encourage further research into birdshot uveitis because they know from first-hand experience that birdshot is not easy to treat. So far, they have raised an amazing £2250, thanks to generous sponsorship from friends and family, and Amanda is working hard to beat her current target. Here, Amanda shares her birdshot story:
‘My journey with birdshot began approximately eight years ago. I was having a bath, in an exceptionally white bathroom, and I noticed black spots of various sizes on the bath. I arranged an appointment with my local optician the next day. He referred me to my GP, who in turn referred me to an eye specialist. He gave me steroid drops and made another appointment for three weeks’ time. He then told me it was uveitis at the back of the eye and referred me to a second specialist at a larger centre, where I was immediately put on a course of high-dose steroid tablets. After many months, I ended up at Moorfields Eye Hospital where my birdshot diagnosis was finally confirmed. I stayed on steroid tablets for several years until I had an Ozurdex steroid implant in my left eye. This worked remarkably well for about eight months, but as soon as it stopped working, my steroid tablets had to be increased. I also needed cataract surgery. The plan was then to get me off steroids and on to the immunosuppressant tacrolimus. After about 10 months, the side-effects from the tacrolimus became intolerable. I got severe constant sharp pins and needles firing all over my body, which stopped as soon as I stopped the medication. I then started a different immunosuppressant, but after nine months on this, I developed shingles, so I had to stop taking that medication till I got better from the shingles. When I went back on the medication, I developed a reaction to it which caused terrible diarrhoea. In April and May 2016, I had Iluvien longer-acting steroid implants placed in each eye which were fantastic, but unfortunately, although they dealt with the uveitis inflammation and macular oedema, the inflammation deep in my choroid still needs help. The latest treatment that Moorfields is going to try is Humira (adalimumab), a biologic treatment given as fortnightly self-administered injections. Humira has only recently been approved by NICE for use in England and Wales for treating certain kinds of uveitis.’
‘There is no doubt that Moorfields Eye Hospital is trying hard to find the right treatment to preserve my vision without completely destroying my quality of life. As you can see from the above, it has not been an easy journey. During my time at Moorfields, I have been very fortunate to be offered treatments that have only recently been introduced into the UK. For example, my chance to receive Iluvien was as part of a Moorfields’ trial. I am very grateful to be treated at this leading London eye hospital.’
‘Throughout my journey I have had fantastic support from fellow ‘birdshotters’, as we call ourselves, in the Birdshot Uveitis Society (BUS) who understand how I feel and what I see’.
Amanda’s journey shows that birdshot uveitis treatment is not necessarily straightforward. She is determined not to give up the battle to preserve her vision so that she can carry on living a normal life.
Birdshot Uveitis Society (BUS) is a charity and support group offering advice and information to people affected with birdshot uveitis. BUS organises ‘Birdshot Days’ for people who live with birdshot and the professionals who treat it. If you are interested in attending the 4th Birdshot Day on Saturday 17th November 2018, please contact: email@example.com or head to their website at: birdshot.org.uk.
To help Amanda raise money for Moorfields Eye Charity and support her 14 mile EyeToEye walk, please donate at to their Just Giving page.