Is there any support for children, young people and families with inherited eye conditions?

Some parents may feel guilt following diagnosis of inherited sight loss in a child. In many cases parents don’t realise they are carriers of a condition and it comes as a shock when their child is affected. Talking about these feelings can be helpful for some, if you are struggling with this issue there are several options: 

• Find communities and groups of those who are in similar situations 

• Find role models in adults or older children / young people with similar conditions 

• Find out information about your child’s vision impairment and what you can do to help. 

• Talk with your eye clinic specialist about genetic counselling 

• Some condition-specific orgnaisations offer counselling and wellbeing resources 

Remember that each person in a family will process their emotions in different ways and at different times. One person may be ready to reach out for support whereas another person may not. Talk through the possibilities together and decide what you’d each like to do. 

Retinal dystrophies 

you can call the Retina UK Helpline 0300 111 4000 for support or speak with your GP or a specialist counsellor. 

Please see further information on some inherited retinal eye conditions conditions on RNIB’s website: Inherited Retinal Dystrophies - Retinitis Pigmentosa | RNIB | RNIB 

Further information on inherited eye conditions can be found on the Retina UK website. 

RNIB Specialist Advice Service Advisors can give further information on this topic