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Living with Adrenomyeloneuropathy

An inherited condition that affects the spinal cord, usually starting in a person's late twenties, with leg stiffness and weakness.

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Understanding Adrenomyeloneuropathy

Adrenomyeloneuropathy (AMN) is an inherited condition that affects the spinal cord and is a form of X-linked adrenoleukodystrophy.

On average, people with AMN begin to have features in their late twenties. Some people also have brain involvement, which can cause behavior changes, vision loss, hearing problems, or seizures.

Signs & symptoms

Symptoms vary from person to person. GARD's summary says they may include:

  • Leg stiffness and weakness that slowly worsens
  • Trouble with balance and coordination (ataxia)
  • Speech difficulties
  • Adrenal gland problems (adrenal insufficiency)
  • Sexual dysfunction
  • Bladder control problems

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 Alliance, Global DARE Foundation and National Adrenal Diseases Foundation 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 Alliance, Global DARE Foundation, National Adrenal Diseases Foundation
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 Alliance 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
Is genetic testing for ABCD1 available for our family?
How often should adrenal function be checked?
Should I have brain imaging to look for brain involvement?

Quick facts

Symptoms usually startAdult
InheritanceX-Linked
GenesABCD1

Changes in the ABCD1 gene cause AMN, and it is inherited in an X-linked way.

GeneticNeurologicalEndocrineInherited Metabolic

Also known as: adult onset adrenoleukodystrophy; amn; amn - adrenomyeloneuropathy

Patient organizations

Source: NIH GARD · AdrenomyeloneuropathyGARD ID 10614 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Adrenomyeloneuropathy.

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Explore research for Adrenomyeloneuropathy

Explore actively recruiting Adrenomyeloneuropathy studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Adrenomyeloneuropathy with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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