Retinitis Pigmentosa – Information and Support
Retinitis Pigmentosa is a disease that affects the retina. It is a type of retinal dystrophy and a genetic condition. It affects the retina at the back of the eye, which is the structure responsible for processing light. As the cells affected, begin to stop working, that causes the vision loss.
What is Retinitis Pigmentosa?
Retinitis Pigmentosa (RP) is the term used for a group of eye diseases that are passed down through families. All of the conditions specifically affect the retina. It typically affects your peripheral vision first, which causes you to have sight problems in low light. RP is a progressive condition which means that your sight continues to deteriorate as you age. This Inherited Retinal Disorder (IRD) is the most common, and causes progressive and permanent changes that reduce your vision and take years to fully develop.
Understanding retinitis pigmentosa
John tells his story and what living with sight loss means to him after being diagnosed with Retinitis Pigmentosa. This film is part of the Understanding Sight Loss guide for RNIB staff and volunteers.
The causes of retinitis pigmentosa
It is a hereditary condition which is passed on through our parents, by a fault or mutation on one of our genes. Genes dictate how our cells behave in the body, if there is a mutation to one of the genes that links to a specific cell then it can cause them to fail. This genetic mutation affects specifically the cells in the retina, which causes them to stop working as they should. The way in which these genes are passed through the generations can tell you who in your family has had the condition, how severely your vision could be affected, and the chances of your children being affected.
Treatment of retinitis pigmentosa
RP can not be corrected or cured. Vision aids and rehabilitation can help people living with the condition to make the most of the sight they have. The early symptoms of the condition start in childhood, with the loss of peripheral vision and struggling in low light. Usually by the age of 40 people can be registered as blind. Ongoing research funded by charitable organisations and many types of treatments are being investigated. While up to 25% of all patients living with the condition will become legally blind in both eyes, it is quite rare to lose all vision. It affects 1 in 4,000 people.
Helpful Links and Organisations
Retina UK
UK based charity that supports children and adults who are living with inherited sight loss and investing in medical research. There aim is to enable people living with the condition to lead better lives today and fund medical research to accelerate the search for treatments for the future.
Click here to find out what ways they can support you
Click here to download their support and information leaflet
Click here to find out about the medical research that they fund
Click here to find out more about recent news and events
RNIB
A national UK based charity that supports both children and adults with a variety of sight loss conditions. They have a comprehensive page about Retinitis Pigmentosa, covering the different types of the condition, how it can effect sight, how it can be managed and coping with the condition.
Click here to find out more information about the condition
Click here to download the ‘Making the most of your sight’ booklet
Sight Research UK
UK charity that funds pioneering research into the causes of eye disease, to develop preventative methods and more effective treatments for children and adults. Established for 35 years, they have been working to bring forward the day when sight loss is a thing of the past.
Click here to visit the information page about Retinitis Pigmentosa
Connect with other parents and find support with VICTA
Join the VICTA Parent Network – with almost a thousand members! You’ll find parents who have vision impaired children of all different ages and with various eye conditions. You can use the group to ask questions you may have and connect with parents of children with shared conditions or from your local area.
Visit the support section of the VICTA Parent Portal here to find out about support groups, both in your area and online.
VICTA activities
VICTA is a national charity supporting children and young adults who have a vision impairment from 0 to 29 years. We have a calendar of fun and engaging activities across the year to help young people make friends, grow in confidence and gain the skills they need for an independent future.
Visit the VICTA activity calendar >
Stay up-to-date with VICTA’s news and latest activities on social media @VICTAUK.
Retinitis Pigmentosa stories
Nicky and Candy’s Street Book Launch
Celebrating the launch of the new book created by visually impaired author, Ben Andrews. Nicky and Candy’s Street will be part of the Better Places book series, published by Tiny Tree Children’s Books. Ben is [...]
The launch of new children’s book for visually impaired young people
Click the link below to watch my interview with Dave Steele aka The Blind Poet. He tells us all about his experiences of living with Retinitis Pigmentosa and the work he has done in the [...]
Talking about my vision impairment – How my confidence grew over time
Feeling confident in disclosing or talking about my vision impairment was a prospect I could never truly identify with when I was younger. I tried my best to be as open as I could [...]
Navigating sight loss – A Q&A with my parents
When I was diagnosed with Retinitis Pigmentosa aged six, three years after my initial symptoms were noted, the life that stretched before me collapsed into a different reality in which my family and I [...]
