What is adrenoleukodystrophy?

Adrenoleukodystrophy is a rare, life-limiting disorder that affects the adrenal glands and nerve cells in the brain. Only boys are affected.

What causes adrenoleukodystrophy?

Adrenoleukodystrophy is caused by a faulty gene preventing the breakdown of fatty acids in cells.

This leads to damage of the adrenal glands, the brain cells and the myelin, which is a substance surrounding nerve fibres that allows the brain cells to send messages to the rest of the body.

What are the symptoms of adrenoleukodystrophy?

The age of onset of symptoms, the rate of progression and the life expectancy differs between those affected.

Symptoms typically start to develop between the age of 4 and 10 and may include:

  • Hyperactivity and disruptive behaviour
  • Problems with memory and learning skills
  • Minor infections causing severe illness due to damage of the adrenal glands

Over the next months or years steadiness and skills decline and the person will become completely dependent. Symptoms in the late stages of the condition may include:

  • Deterioration of vision
  • Epilepsy
  • Loss of control of the muscles that are responsible for chewing, coughing and swallowing
  • Chestiness that may cause infections and increased physical weakness

Unfortunately there is no treatment; however, there is support available.

Are you affected by adrenoleukodystrophy?

If you’re affected by adrenoleukodystrophy, 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 adrenoleukodystrophy, emotional support such as counselling, phone befriending and group therapy and social activities to people with adrenoleukodystrophy and their family, friends and carers from all over the UK from our centre in Liverpool.

Looking to talk to someone?

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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 with adrenoleukodystrophy

We support carers, friends and family too

Are you a carer for or relative of someone with adrenoleukodystrophy? 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 adrenoleukodystrophy, 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

The Brain Charity's library

The Brain Charity’s library has a range of resources related to adrenoleukodystrophy and on many other disability-related issues.

Support groups

Leukodystrophy Support on Health Unlocked

Leukodystrophy Carriers on Heath Unlocked

Brain & Spine Foundation Neuro Carers

Support groups at The Brain Charity

Are you interested in setting up an adrenoleukodystrophy support group, or do you already run one? Email to let us know.

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

Other charities

Alex The Leukodystrophy Charity

Brain & Spine Foundation