Living with Adrenoleukodystrophy
An inherited condition that mainly affects the nervous system and the adrenal glands, causing loss of the nerve covering (myelin).
Understanding Adrenoleukodystrophy
The fatty covering that insulates nerves in the brain and spinal cord (myelin) breaks down. Damage to the outer layer of the adrenal glands also causes a shortage of certain hormones. GARD describes four types: a childhood cerebral form, adrenomyeloneuropathy, an adrenal insufficiency only form, and an asymptomatic form. The childhood cerebral form typically occurs in boys.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Trouble walking (gait problems)
- Adrenal gland problems (adrenal insufficiency)
- Learning and behavior changes
- Clumsiness and poor coordination
- Vision problems
- Headache
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, genetic specialists, hormone specialists and seizure and epilepsy specialists.
- 3Consider 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.
- 4Connect 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
Quick facts
Changes in the ABCD1 gene cause this condition, and it is inherited in an X-linked way.
Also known as: abcd1 deficiency; addison disease and cerebral sclerosis; adrenoleukodystrophy, x-linked; adrenoleukodystrophy, x-linked recessive; adrenomyeloneuropathy, adult; adrenomyeloneuropathy, adult, x-linked recessive
Patient organizations
- ALD AllianceAdrenoleukodystrophy · United States
- Global DARE FoundationAdrenoleukodystrophy · United States
- National Adrenal Diseases FoundationAdrenoleukodystrophy · United States
- ALD ConnectAdrenoleukodystrophy · United States
- Arrivederci ALDAdrenoleukodystrophy · Ben's Friends
- Fight ALDAdrenoleukodystrophy · Hunter's Hope Foundation
- Leukodystrophy Resource & Research OrganisationAdrenoleukodystrophy · RARE-X
- Remember The GirlsAdrenoleukodystrophy · The Stop ALD Foundation
You are more than your diagnosis
Perspectives from people navigating life with Adrenoleukodystrophy.
Explore research for Adrenoleukodystrophy
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- 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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