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Living with X-linked cerebral adrenoleukodystrophy

A progressive inherited condition that affects the adrenal glands, brain white matter, and nerves, often starting in childhood.

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Understanding X-linked cerebral adrenoleukodystrophy

X-linked cerebral adrenoleukodystrophy is a progressive condition in which cells' peroxisomes don't work properly, affecting hormones and the nervous system.

It can cause adrenal failure and sometimes low testicular function, along with damage to the spinal cord and nerves and to the brain's white matter (leukodystrophy). The age when it starts varies widely, but it is often in the first ten years of life.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Low adrenal gland function (adrenal insufficiency)
  • Damage to the brain's white matter
  • Spinal cord problems (myelopathy)
  • Nerve damage with weakness and numbness
  • Behavior changes
  • Learning difficulties and decline in thinking

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include brain and nervous system specialists, genetic specialists, hormone specialists and seizure and epilepsy specialists.

  3. Consider genetic testing

    Changes in ABCD1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.

  4. Connect with expert centers

    ALD Connect, Epilepsy Foundation and Resolve: The National Infertility Association may keep lists of experts for this condition.

Care & treatment

Care team
Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Seizure and epilepsy specialists (epileptologist)
Expert care
Expert lists: ALD Connect, Epilepsy Foundation, Resolve: The National Infertility Association
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with ALD Connect and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Could ABCD1 genetic testing help our family?
How are the adrenal glands and brain monitored?
Which specialists should be on my care team?

Quick facts

Symptoms usually startany time in life
InheritanceX-Linked
GenesABCD1

X-linked cerebral adrenoleukodystrophy is caused by changes in the ABCD1 gene and follows X-linked inheritance.

GeneticNeurologicalEndocrineInherited Metabolic

Also known as: adrenoleukodystrophy x-linked cerebral form; x-cald

Patient organizations

Source: NIH GARD · X-linked cerebral adrenoleukodystrophyGARD ID 9412 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

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Explore research for X-linked cerebral adrenoleukodystrophy

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