Understanding Leber Congenital Amaurosis

Leber Congenital Amaurosis (LCA) is an inherited retinal degenerative disorder that causes an infant to be born with severely impaired vision.

The infant may also be born with or develop roving or jerking involuntary eye movements. There is no significant treatment and the child may benefit from the use of low-vision aids. 

  • Children born with LCA have poor vision because of the impaired development of the retina which is the light sensitive film at the back of the eye.  

  • Given the severity of the condition, it is one of the most extensively researched inherited retinal disorders. 

  • Electroretinography (ERG) testing, which detects function of the retina, is important in measuring if the child can see and how much.

Children may poke their eyes or press on them with their fists or fingers. This may lead to misshapen and thinned corneas and a sunken appearance of the eyes. The level of vision remains stable once childhood is past. Vision may only be at the level of seeing light and dark or detecting hand motions. Diagnosis can be difficult and can be hard to distinguish what is vision and what is behaviour in an infant or child.

References:
Vision Australia

How can CPL help?

Support at home 

CPL can support you with day-to-day tasks, depending on your needs, from getting ready for school, university or work, right through to mealtime assistance and medication.

Getting out into your community

Community access is an important part of everyday life. As this looks different for everyone, we will meet with you and your family to discuss what you like to do and how we can support you.

Independent living

CPL provides 24/7 Supported Independent Living services, and has a number of vacancies in accessible homes.

Employment and Training opportunities

There are a range of disability employment and training pathways for people with Leber Congenital Amaurosis designed to help you reach your goals.

 

Give us a call on 1800 275 753 to discuss your support needs with our team, or send an online enquiry and we'll be in touch.

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