Living with Retinitis Pigmentosa
Although there’s currently no treatment for retinitis pigmentosa, you can get help to manage your condition and adapt to progressive loss of vision over time.
Retinitis pigmentosa (RP) is a fairly rare eye disease, affecting around one in every 4,000 people worldwide (Source: OJRD).
If you're living with retinitis pigmentosa, it’s likely you’ll develop a visual impairment that impacts daily life. It’s natural to be worried, but there is plenty of support for you and your family to help you as your vision changes.
The effects of RP can begin in childhood, so it helps to get the right support in place as early as possible.
2.5m
With RP worldwide
1 in 4000
In the UK
75
Research studies
Coping with Retinitis Pigmentosa
Managing life with retinitis pigmentosa
Although there’s currently no treatment for retinitis pigmentosa, you can get help to manage your condition and adapt to progressive loss of vision over time.
Children and adults living with retinitis pigmentosa will need to see their eye doctor for regular check-ups to monitor the condition as it progresses. Your doctor can also help you manage the condition and get support, for example, by referring you to a low vision clinic.
Living independently with Retinitis Pigmentosa
The support you need to live independently with retinitis pigmentosa is likely to change as the condition gradually affects your sight. However, the earlier you reach out and get support, the easier it can be to adapt to daily life with vision loss.
Does Retinitis Pigmentosa lead to blindness?
Over time, retinitis pigmentosa does lead to significant visual impairment. However, many people with RP have some useful vision for decades before experiencing severe vision loss. One of the challenges of living with RP is adjusting to vision changes as it progresses, but there is help and support. You don't have to manage alone.
Life with Retinitis Pigmentosa
Supporting children with Retinitis Pigmentosa
If your child has been diagnosed with RP, there are a few ways you can support their development both at home and in school.
• It’s a good idea to make your child’s school aware of their condition and how it affects them. Qualified Teachers for Visual Impairment can provide expert support and advice. Find out more about getting education support for your child.
• There are plenty of practical ways to help your child, for example, keeping your home tidy and free of obstacles and keeping regularly used items in a consistent location so they’re easy to find.
• Children might need support for coping with their feelings about having RP, especially when dealing with uncertainty about the future. The right support from early on can help them build their confidence and fulfil their potential. We can support them at every stage of their development.
Practical tips for making the most of your vision
One of the earliest symptoms is ‘night blindness’ (difficulty seeing in poor light) and loss of peripheral vision (side vision) that we rely on for moving about. This loss of peripheral vision can eventually lead to tunnel vision. After many years, possibly decades, RP can also affect the central vision that gives us the visual acuity we use for seeing details, for example, when reading and recognising faces.
At every stage of your experience with RP, there are ways to make the most of your useful vision. Your ophthalmologist will be able to refer you for a low vision assessment (LVA) that can help find what’s best for you. You should have a team of people around you, such as occupational therapists and mobility specialists, to help find the aids, support and services you need. Local social services can also advise on getting around safely and offer practical support for managing at home.
Retinitis Pigmentosa support groups
When you live with a condition that has a significant impact on your sight, it can help to connect with other people having similar experiences. They often understand the emotional side of things, as well as being able to share tips and advice from someone with real-life experience.
Charities such as Retina UK and communities on Facebook can help you connect with other people living with retinitis pigmentosa. This means you can get peer support from someone who understands what you and your family members are going through.
Retinitis Pigmentosa and driving
If you want to drive, you must tell the DVLA that you have retinitis pigmentosa. The law requires drivers to have a minimum field of vision. Since RP is a progressive condition that particularly affects peripheral vision, it’s likely that at some point, your visual field won’t meet the minimum standard. Usually, your night vision will be affected first, meaning you will only be able to drive during the day.
It’s a good idea to plan ahead and find other transport options before you need to stop driving. Look into public transport options near you and alternatives such as taxis.
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