“Things moved very quickly. Within hours, I was having multiple blood tests, a chest X-ray, and my eyes were examined by several doctors. I was very frightened and worried greatly about what lay ahead. “My work and personal life were disrupted by week-after-week of eye clinic appointments. The hospital was 30 miles away and, with eyes dilated at each appointment, I had to rely on friends to drive me there. My treatment during that time - different types of eye drops - did not improve my eyes. “Eventually, I was referred to a tertiary eye centre for further investigation. After a fluorescein angiogram, I overheard a discussion about my condition and heard the word ‘birdshot’ for the first time. I went online for information and found the BUS site. “I then spent the next four weeks in limbo: upset and worried till my next appointment, when my consultant confirmed the diagnosis. He told me that each birdshot patient is unique. It would be trial and error to find the correct medications and dosages for me. Since then, my treatment journey has been difficult: juggling various medicines and their side-effects - prednisolone, mycophenolate, ciclosporin – with very little improvement. Ciclosporin in particular made me physically unwell. “I have now been fortunate to be prescribed Humira (adalimumab), recently approved for use in England and Wales. I have been on fortnightly self-administered injections of Humira since September 2017. I have my life back both mentally and physically. My eyesight is improving with each dose and I no longer feel so ill. “Throughout my journey I have had fantastic support from fellow ‘birdshotters’ on the BUS Facebook group who understand how I feel and what I see. “However, my most important source of information is the BUS website, which tells you everything you need to know about birdshot, its treatments, side effects, and more. It helped me to get through the endless round of hospital appointments and tests. For anyone newly diagnosed, I would highly recommend checking it out, to know you are not alone on your birdshot journey.”
Having recently done the gadget guide training I said “that’s something that bump-ons can help with. A bump-on gets put onto the socket above the top pin hole, then put one on the top of the plug and line the two up”. Members also share if they find a low vision aide to be helpful e.g. someone was debating whether it was worth buying a talking watch and three people all at once said “yes most definitely I wouldn’t be without mine”. On occasions our members share about their forthcoming treatment, it’s nice that they feel we have created a ‘safe place’ to voice anything they mightn’t share with loved ones and the following meeting members will ask how they got on. The camaraderie that has formed within the group led us to take part in an awareness church service in March 2017, all doing our bit to explain the condition, how it affects us and that there are things we can still do. We gave readings and chose hymns that were appropriate to the theme. It was very well received and, pardon the pun, it opened the congregation’s eyes. Milford Haven Macular Society support group’s membership has doubled since it began two years ago, proving the need for it. We all look forward to going to meetings as we have become a close-knit group who share tips and the not so good things. In its way the group is alleviating isolation, building people’s confidence and a little at a time proving to ourselves that not being able to see isn’t the end of the world; that we are capable of more than we think we are and despite the age range of our members, sight loss brings us together. Macular Society help line: 0300 3030 111 The Norrie Disease Society. The Norrie Disease foundation was set up in early 2017 by three mums who’s sons have Norrie disease and whom shared the same vision to promote vital new research and provide more support to families by further strengthening the Norrie network.