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Doctor insights on: Adrenoleukodystrophy

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Dr. Harry Chugani
45 doctors shared insights

Adrenoleukodystrophy (Overview)

Adrenoleukodystrophy is a term for a set of rare, inherited conditions where a decreased ability to breakdown some types of fat leads to brain damage, weak muscles, adrenal gland problems, and eventual death.


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What is adrenoleukodystrophy?

What is adrenoleukodystrophy?

Not a good disorder: Adrenoleukodystrophy describes several closely related inherited disorders that disrupt the breakdown of very long chain fatty acids (vlcfa). These vlcfa then accumulate in the nervous system, especially the brain, and the adrenal glands and disrupt their function. The childhood form is progressive and there is no specific treatment available yet. ...Read more

Dr. Harry Chugani
45 doctors shared insights

Adrenoleukodystrophy (Overview)

Adrenoleukodystrophy is a term for a set of rare, inherited conditions where a decreased ability to breakdown some types of fat leads to brain damage, weak muscles, adrenal gland problems, and eventual death.


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What are the symptoms of adrenoleukodystrophy?

Depends on type: The symptoms depend on the type of adrenoluekodystrophy. This site is very educational: http://www.Adrenoleukodystrophy.Net/. ...Read more

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What are the tests for adrenoleukodystrophy?

Tests: Tests by a neurologist can include: vision screening, MRI of the brain, blood tests for (vlcfa) very long-chain fatty acids, genetic testing and skin biopsy. ...Read more

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Does anyone know about adrenoleukodystrophy diease?

Complex illness: This is an x-linked recessive disease mostly in young males, but can be seen later in life, due to accumulation of long-chain fatty acids. Causes loss of behavioural control, even hyperactivity, but can lose ability to walk, have adrenal and sexual failure. Predominant damage to central nervous myelin (nerve insulation). Hard to diagnose due to varied presentation. No cure. Lorenzo's oil? ...Read more

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Can adrenoleukodystrophy be treated?

No real cure: Unfortunately, much of what can be done is symptomatic relief, such as adrenal support and perhaps hormonal treatment for testicular dysfnctn. It has been said that lorenzo's oil is of value, but little proof of success. Contact a major medical school, as research projects may result in a few breakthroughs. ...Read more

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What treatment is currently used for adrenoleukodystrophy, or ald?

Some treatments: From: http://www.Ncbi.Nlm.Nih.Gov/pubmedhealth/pmh0002165/ adrenal dysfunction is treated with steroids (e.g., cortisol). A diet low in very-long-chain fatty acids (vlcfa) and taking special oils (e.g., lorenzo's oil) can lower the blood levels of vlcfa, but doesn't help all patients. Bone marrow transplant is also being tested. See also: http://www.Aldfoundation.Org/. ...Read more

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Is lorenzo's oil a cure for adrenoleukodystrophy?

I wish: There was a lot of press regarding this a while ago. The oil does nothing and represents a false hope to a devastating illness. Contact your local medical school where you live, as they have excellent docs to deal with this problem. ...Read more

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Is genetic testing for adrenoleukodystrophy possible?

Is genetic testing for adrenoleukodystrophy possible?

Yes: Because adrenoleukodystrophy is a genetic condition, there are tests for it. You can find some good information about the disorder, testing and centers that are experts in the disorder at the national organization for rare diseases (nord). Their web site is www.Rarediseases.Org. Disorders are listed alphabetically, along with hospitals/providers that have special expertise in the disorder. ...Read more

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Is it possible to figure out if the embryo will inherit a disease called adrenoleukodystrophy?

Is it possible to figure out if the embryo will inherit a disease called adrenoleukodystrophy?

Yes: If it is the x-linked type of adrenoleukodystrophy then prenatal diagnosis is available. See this page for more information: http://www.Ncbi.Nlm.Nih.Gov/pubmedhealth/pmh0002165/. ...Read more