Aicardi syndrome

What is Aicardi syndrome?  

Aicardi syndrome is a rare neurological condition that is present at birth due to abnormal brain development. It is diagnosed through MRI and an eye exam. 

What causes Aicardi syndrome? 

Aicardi syndrome is only present in females as male babies with Aicardi are lost as a miscarriage. The exact cause is unknown, however it is a genetic condition and it is characterised by underdevelopment of the structure that links the two halves of the brain. 

What are the symptoms of Aicardi syndrome? 

The symptoms are spasms in infancy and persistent epilepsy, and an abnormal appearance to the retina of the eyes. There are other associated symptoms, including 

  • Abnormalities in the bone structure of the spine 
  • Cleft lip and palate 
  • Disturbed sleep  
  • Learning disabilities can occur from mild to severe 
  • Visual impairment  
  • Brain cysts 
  • Limited to no independent mobility, and will need constant assistance 
  • Life expectancy can be limited 

Are you affected by Aicardi syndrome?

 Caring for someone affected by Aicardi syndrome? 

We support carers, friends and family too. 

Are you a carer for or relative of someone with Aicardi syndrome? It’s just as important for you to look after your own physical and mental wellbeing too. 

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Aicardi syndrome, from anywhere in the UK. 

We also run additional carer advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.  

If you’re affected by Aicardi syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Aicardi syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with Aicardi syndrome from all over the UK from our centre in Liverpool.

You don’t need to be a formal or registered carer. We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.  

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by Aicardi syndrome

We support carers, friends and family too

Are you a carer for someone with this condition? It’s just as important to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

Other resources

The Brain Charity’s Library

The Brain Charity’s library has a range of resources on Aicardi syndrome and on many other disability-related issues. Search the catalogue online here. 

Corpal

Corpal offers a free helpline for people living with Aicardi syndrome. 

+44(0)7427 429 388 

info@corpal.org.uk 

Aicardi Syndrome – Welcome to Corpal

Epilepsy Action

Beginning again soon – contact activities@thebraincharity.org.uk for more details 

 

Are you interested in setting up a Aicardi syndrome support group, or do you already run one? Email info@thebraincharity.org.uk to let us know. 

Alternatively, you can check out our list of related support groups here