Adrenoleukodystrophy (patient information)

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What is Adrenoleukodystrophy?

Adrenoleukodystrophy describes several closely related inherited disorders that disrupt the breakdown (metabolism) of certain fats (very-long-chain fatty acids).

What are the symptoms of Adrenoleukodystrophy?

Childhood cerebral type:

Adrenomyelopathy:

Adrenal gland failure (Addison type):

What causes Adrenoleukodystrophy?

Adrenoleukodystrophy is passed down from parents to their children as an X-linked genetic trait. It therefore affects mostly males, although some women who are carriers can have milder forms of the disease. It affects approximately 1 in 20,000 people from all races.

The condition results in the buildup of very-long-chain fatty acids in the nervous system, adrenal gland, and testes, which disrupts normal activity. There are three major categories of disease:

Who is at risk for Adrenoleukodystrophy?

How do I know I have Adrenoleukodystrophy?

  • Blood levels
  • Chromosome study to look for changes (mutations) in the ABCD1 gene
  • MRI of the head

When to seek urgent medical care

Call your health care provider if:

  • Your child develops symptoms of X-linked adrenoleukodystrophy
  • Your child has X-linked adrenoleukodystrophy and is getting worse

Treatment options

Adrenal dysfunction is treated with steroids (such as cortisol).

A specific treatment for X-linked adrenoleukodystrophy is not available, but eating a diet low in very-long-chain fatty acids and taking special oils can lower the blood levels of very-long-chain fatty acids.

These oils are called Lorenzo's oil, after the son of the family who discovered the treatment. This treatment is being tested for X-linked adrenoleukodystrophy, but it does not cure the disease and may not help all patients.

Bone marrow transplant is also being tested as an experimental treatment.

Where to find medical care for Adrenoleukodystrophy

Directions to Hospitals Treating Adrenoleukodystrophy

What to expect (Outlook/Prognosis)

The childhood form of X-linked adrenoleukodystrophy is a progressive disease that leads to a long-term coma (vegetative state) about 2 years after neurological symptoms develop. The child can live in this condition for as long as 10 years until death occurs.

The other forms of this disease are milder.

Possible complications

  • Adrenal crisis
  • Vegetative state (long-term coma)

Sources

http://www.nlm.nih.gov/medlineplus/ency/article/001182.htm


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