Leukodystrophies, Adrenoleukodystrophy (A.L.D.), Lorenzo's Oil disease, metachromatic leukodystrophy (MLD), Refsum's disease, Krabbe's disease, phenylketonuria, Canavan disease, Pelizaeus-Merzbacher disease, Alexander's disease, cerebrotendinous xanthomatosis (CTX), juvenile HD, Westphal variant, akinetic-rigid HD

What is leukodystrophy?

Leukodystrophies are a group of rare genetic disorders, often diagnosed during childhood. There are more than 90 identified leukodystrophies.

What causes leukodystrophy?

Leukodystrophies mainly affect children and are caused by a problem in the development of the brain’s white matter.

What are the symptoms of leukodystrophy?

Symptoms of leukodystrophies may include:

  • Problems with movement
  • Hearing loss
  • Balance issues
  • Difficulties with speech

Are you affected by a leukodystrophy?

If you’re affected by a form of leukodystrophy, 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 leukodystrophy, emotional support such as counselling, phone befriending and group therapy and social activities to people with leukodystrophy from all over the UK from our centre in Liverpool.

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 with a leukodystrophy

The symptoms of leukodystrophies vary and can be difficult for others to understand. Some leukodystrophies are also extremely rare.

This can result in the person affected by leukodystrophy and their family feeling isolated. For this reason, it is important to reach out and seek support.

We support carers, friends and family too

Are you a carer for or relative of someone with a leukodystrophy? 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 leukodystrophy, 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 library at The Brain Charity has a range of resources on leukodystrophy and on a wide range of disability-related issues.

Support groups

Health Unlocked peer support

Support groups at The Brain Charity

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

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

Other charities

Metabolic Support UK

Website: www.metabolicsupportuk.org
Tel: 0845 241 2173

Alex, the Leukodystrophy Charity

Website: www.alextlc.org
Tel: 020 7701 4388
Email: info@alextlc.org

MLD Support Association UK

Website: www.mldsupportuk.org.uk
Tel: 07977 440809

Contact - charity for families with disabled children

Website: contact.org.uk