How can a genetic counsellor help with inherited sight loss?

Genetic counsellors are specially trained healthcare professionals with extensive scientific knowledge who spend time talking to families living with inherited conditions. The aim of genetic counselling is to help you understand the condition, make choices, access any appropriate screening or medical treatment, communicate with relatives and find suitable support. Genetic counsellors will often draw a family history, explain relevant inheritance patterns and discuss risks to children. They are also experts at explaining genetic test results.

They will be able to support you in making decisions about testing and talk to you about how you are feeling about any issues surrounding this such as:

  • the risks and benefits of having a genetic test
  • the results of your test and what they mean for you and your family
  • the risk of you and your partner passing on an inherited sight loss condition to your children
  • the risk to you and your children if you are currently unaffected but have a relative living with inherited sight loss
  • your options around family planning, testing during pregnancy, and assisted reproductive technology (pre-implantation genetic diagnosis) if you do not want your children to inherit the condition. 

Further information including how to get a genetic counselling can be found on the Retina UK website.

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