Adrenoleukodystrophy

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Adrenoleukodystrophy (ALD) is an X-linked genetic disorder involving damage to the myelin sheath (the insulating membrane surrounding nerve cells in the brain) and dysfunction of the adrenal glands. People with ALD have neurological symptoms as well as adrenal insufficiency. In the more severe childhood form of ALD, symptoms often include behavioral or cognitive changes, visual loss, learning disabilities, seizures, poorly articulated speech, difficulty swallowing, deafness, disturbances in gait and coordination, fatigue, vomiting, darkened skin and progressive dementia. In the milder adult-onset form of ALD, symptoms often include progressive stiffness, weakness or paralysis of the lower limbs, ataxia and the potential deterioration of brain function. Men are generally more severely affected by ALD because they only have one X chromosome, whereas the extra X chromosome women have helps protect them against ALD. The disorder affects approximately one in 18,000 Americans.

Treatment options include taking adrenal hormones, participating in physical therapy, psychotherapy, support groups and getting special education (especially for children). Due to the neurological deterioration of the disease, most childhood forms lead to death within one to 10 years after the onset of symptoms. Most people who experience an adult-onset of the disorder will see a slow progression of symptoms lasting for decades. There are more treatment options and a better prognosis when the disorder is caught early, but this can be difficult because it is rare and generally unheard of – even in the medical community.

The effects of adrenoleukodystrophy can be devastating, especially in children. Many boys are born seemingly healthy then begin to develop symptoms mimicking other illnesses, including mental disorders such as ADD or neurological complications such as spinal meningitis. Ultimately the symptoms of ALD continue to progress and can result in a vegetative state or death. Adults generally don’t experience such a severe and sudden decline, but the symptoms can make it difficult for them to continue with their usual activities. Although ALD appears most frequently (and severely) in men, women can also carry the gene and occasionally some milder symptoms such as stiffness, weakness, numbness or joint pain.

There are several resources and organizations available to provide information and support to people living with adrenoleukodystrophy. Many of these groups also fund research to continue exploring new treatment options and preventative measures for the disorder.

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