Adrenoleukodystrophy care at Mayo Clinic

  • Experience. Mayo Clinic doctors trained in treating children who have brain and nervous system conditions (pediatric neurologists), doctors trained in brain and nervous system conditions (neurologists), and others have experience diagnosing and treating people who have adrenoleukodystrophy and other neurological conditions.
  • Team approach. Mayo Clinic pediatric neurologists work with doctors trained in adrenal hormone function (endocrinologists) and others to develop the most appropriate treatment for your condition.
  • Diagnostic and genetic testing. Mayo Clinic doctors conduct genetic testing and research for people who have adrenoleukodystrophy and their families. The Biochemical Genetics Laboratory at Mayo Clinic in Rochester, Minnesota, is one of the few facilities in the United States that performs blood tests to confirm the diagnosis of adrenoleukodystrophy.
  • Treatment expertise. Mayo Clinic doctors have expertise in providing comprehensive care for children and adults who have adrenoleukodystrophy. The Mayo Clinic Peroxisomal Disorders Program at Mayo Clinic in Rochester, Minnesota, provides integrated care, including stem cell transplantation, for people who have all forms of ALD.

Types

X-linked adrenoleukodystrophy (ALD)

X-linked adrenoleukodystrophy (ALD) is a type of genetic condition (leukodystrophy) that damages the membrane surrounding nerve cells in your brain (myelin sheath). X-linked ALD is caused by a genetic defect on the X chromosome.

The condition may occur as childhood-onset ALD or as an adult-onset form of the condition (adrenomyeloneuropathy). The condition affects males more severely females, who carry the disease.

  • Childhood-onset ALD is a form of X-linked ALD that usually occurs between ages 4 and 10. The white matter of the brain is progressively damaged (leukodystrophy) and symptoms worsen over time. If not diagnosed early, childhood-onset ALD may lead to death within five to 10 years.
  • The adult-onset form (adrenomyeloneuropathy) is a less severe and slowly progressive form of ALD and causes symptoms such as a stiff gait and bladder and bowel dysfunction.
  • Hormone-producing glands (adrenal glands) often fail to produce enough steroids (adrenal insufficiency) in people who have ALD.

    In Addison's disease, a type of X-linked ALD, people have severe adrenal insufficiency. Neurological symptoms may or may not develop in people who have Addison's disease. Most men with neurological symptoms do develop adrenal insufficiency and require monitoring by an endocrinologist.

  • Women who carry the condition may develop a mild form of adrenomyeloneuropathy.

Mayo Clinic in Rochester, Minn., ranks No. 1 for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. Mayo Clinic in Phoenix/Scottsdale, Ariz., and Mayo Clinic in Jacksonville, Fla., are ranked among the Best Hospitals for neurology and neurosurgery by U.S. News & World Report. Mayo Clinic also ranks among the Best Children's Hospitals for neurology and neurosurgery.

Locations, travel and lodging

Mayo Clinic has major campuses in Phoenix and Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota. The Mayo Clinic Health System has dozens of locations in several states.

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Costs and insurance

Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people.

In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.

Learn more about appointments at Mayo Clinic.

Please contact your insurance company to verify medical coverage and to obtain any needed authorization prior to your visit. Often, your insurer's customer service number is printed on the back of your insurance card.

Dec. 12, 2014