Adrenoleukodystrophy

Alternative Names

Treatment

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.

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)

When to Contact a Medical Professional

Call your health care provider if your child develops symptoms of X-linked adrenoleukodystrophy or if you have a child with X-linked adrenoleukodystrophy who is worsening.