Lorenzo’s oil disease

Adrenoleukodystrophy, ADM

What is Lorenzo’s oil disease?

Lorenzo’s oil disease (ALD) is a rare, progressive condition that affects the adrenal glands and white matter of the brain.

Without proper treatment and management, Lorenzo’s oil disease can lead to severe neurological deterioration and can be fatal. However, it’s important to note that the severity and progression of the disease can vary among individuals, and some individuals may have a milder form of the disease.

Early detection, appropriate medical interventions, and ongoing care can help slow down the progression of Lorenzo’s oil disease and improve quality of life for affected individuals.

This is a very rare condition meaning one in every 21,000 males are born with ALD.

There are 3 main types of Lorenzo’s oil disease, these include:

  • Child cerebral form: diagnosed between the ages of 3-10
  • Adrenomyeloneuropathy (AMN): this usually begins at the ages of 20-30. The same mental decline occurs, but the process is slower. The nervous system is impacted in 1/3 people who live with this condition.
  • Addison’s Type: many people with ALD also live with Addison’s. This affects the adrenal glands, causing lower levels of the adrenalin, cortisol and aldosterone hormones.

Lorenzo’s oil disease is a condition named after the movie ‘Lorenzo’s Oil’, a true story about a boy living with ALD.

What causes Lorenzo’s oil disease?

Lorenzo’s oil disease is genetic. Normally, only men are affected, and women are the carriers for this disease as it affects the X chromosome.

The condition leads to a build-up of very long chain fatty acids in the brain. Nerve cells usually have a protective sheath around them called myelin. However, in the case of ALD, the build-up of these fatty acids results in the loss of myelin. This makes the affected nerve cells unable to effectively transmit information to the rest of the brain.

What are the symptoms of Lorenzo’s oil disease?

Childhood symptoms of Lorenzo’s oil disease include:

  • Poor memory
  • Difficulty reading, writing, and understanding speech
  • Hyperactivity
  • Crossed eyes
  • Seizures
  • Handwriting that’s gradually getting worse
  • Problems with vision
  • Change in muscle tones
  • Poor coordination

Adults may experience:

  • Urine problems
  • Leg stiffness
  • Muscle weakness
  • Problems with visual memory

People who live with Addison’s type may experience:

  • Loss of muscle mass
  • Nausea and vomiting
  • Lack of appetite
  • Coma
  • Appetite changes

Are you affected by Lorenzo’s oil disease?

If you’re affected by Lorenzo’s oil disease, 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 Lorenzo’s oil disease, emotional support such as counselling, phone befriending and group therapy and social activities to people with Lorenzo’s oil disease and their family, friends and carers 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 Lorenzo’s oil disease

We support carers, friends and family too

Are you a carer for or relative of someone with Lorenzo’s oil disease? 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 Lorenzo’s oil disease, 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 Lorenzo’s oil disease and on many other disability-related issues.

Support groups

Support groups at The Brain Charity

Are you interested in setting up a Lorenzo’s oil disease 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

Alex the leukodystrophy charity

Website: www.alextlc.org

Phone: 0207 701 4388

Email: info@alextlc.org