Living with birdshot chorioretinopathy
Birdshot chorioretinopathy is a rare disease that can be hard to diagnose. As a result, you might live with symptoms for a while before getting a clear diagnosis. Around 20% of people get better without needing treatment (Source: Orphanet Journal of Rare Diseases), but most people need corticosteroids and immunosuppressant medicines to get the inflammation under control.
Early symptoms include floaters and blurred vision. As it progresses, the condition can cause night blindness, sensitivity to light (photophobia), distorted vision and other vision problems. Managing life with the symptoms of birdshot chorioretinopathy can sometimes be challenging, but there is support to help you live independently and carry on doing the things you enjoy.
Managing your birdshot chorioretinopathy
Most people living with birdshot chorioretinopathy need long-term steroids and immunosuppressant medicines. It's common to have flare-ups when symptoms are worse, as well as periods of remission. If you notice changes in your vision, speak to your ophthalmologist as soon as possible. This could be the sign of a flare-up or complication, such as macular oedema, which needs treatment to prevent vision loss.
The best treatment options and doses vary between different people, and it can take time to reach the best combination of treatment for you. Immunosuppressant medicines can also cause a range of side effects, such as bone and kidney problems. Speak to your healthcare team about any side effects you have, as they may adjust your medicine or dose or prescribe medicines to lessen the side effects.
Can you drive with birdshot chorioretinopathy?
As long as your vision meets the DVLA's minimum eyesight requirements for driving, you can still drive. You can also wear contact lenses or glasses to correct refractive errors if necessary to meet the required standard. You might also want to use tinted lenses if you have trouble with glare. It's best to check with your ophthalmologist that your sight meets this standard, as your vision can change over time with birdshot chorioretinopathy.
Can you work with birdshot chorioretinopathy?
Having a visual impairment doesn't mean you'll have to stop working, but you may need some extra support. Under the Equality Act, all employers have a duty to make reasonable adjustments for people with visual impairments. Your needs might change over time: some people experience flare-ups with worse symptoms then remission. You might also have side effects, including cataracts and glaucoma that may need treatment.
It's a personal choice, but telling your employer and colleagues about your condition could help. You can explain your symptoms, visual loss and treatment side effects and the type of support you need at work. This could include:
- Time off for regular follow-up appointments with your ophthalmologist and other healthcare professionals looking after you.
- Flexible working arrangements like working from home or part-time that make it easier to work when your symptoms are worse during a flare-up.
- Large print materials and products, such as keyboards and phones, making it easier to do your work with vision problems.
- Low vision aids such as magnifiers to help with reading.
- Screen reader software and other technology.
Get more ideas about how to make the most of your vision.
The Access to Work scheme provides grants to employers for equipment or services you need to work. Grants can fund transport to and from work, a support worker to accompany you at work, and more.
Support for those living with birdshot chorioretinopathy
It's natural to feel worried about living with a condition that can cause vision loss. There are bound to be days when you feel better or worse, especially as your symptoms change with flare-ups or treatment. Try letting family and friends know how you're feeling, so they can understand and help you. Other people living with eye conditions and visual impairment can be a great source of practical advice and emotional support. Contact us to find out how we can connect you with others. Many people living with rare diseases like birdshot chorioretinopathy find it especially helpful to connect with others who have the same condition. The Birdshot Uveitis Society is a UK organisation dedicated to supporting people with the condition.
If you're dealing with vision loss, there are products, support and services designed to help you be as independent as possible. These include:
- Low vision assessments. Your ophthalmologist or eye clinic may refer you for a low vision assessment to review your vision and the visual aids that could best help you.
- Local social services who can support you in keeping safe at home and getting around safely if sight loss affects your mobility.
- Everyday technology. Books, newspapers, and magazines are available on e-readers and tablets in large text. Computers and phones can read messages out loud. You can even get clever products such as talking microwaves and weighing scales.
- Simple low vision aids like magnifiers help see details better. Some simple, low-tech solutions, like phones with large numbers and large print keyboards, can make life easier.
Frequently asked questions
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You can contact us to find out about services and support tailored to your individual needs.