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The leukodystrophies are rare diseases that affect the cells of the brain. Specifically, the diseases affect the myelin sheath, the material that surrounds and protects nerve cells. Damage to this sheath slows down or blocks messages between the brain and the rest of the body. This leads to problems with
Most of the leukodystrophies are genetic. They usually appear during infancy or childhood. They can be hard to detect early because children seem healthy at first. However, symptoms gradually get worse over time.
There are no cures for any of the leukodystrophies. Medicines, speech therapy and physical therapy might help with symptoms. Researchers are testing bone marrow transplantation as a treatment for some of the leukodystrophies.
National Institute of Neurological Disorders and Stroke
'''Leukodystrophy''' refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least ten different chemicals. The leukodystrophies are a group of disorders that are caused by genetic defects in how myelin produces or metabolizes these chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the chemicals. Specific leukodystrophies include metachromatic leukodystrophy, Krabbe disease, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Childhood Ataxia with Central Hypomyelination or CACH (also known as Vanishing White Matter Disease), Alexander disease, Refsum disease, and cerebrotendinous xanthomatosis. The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease. ''This article incorporates public domain text from the [http://www.ninds.nih.gov/index.htm National Institute of Neurological Disorders and Stroke].'' [ Read More ]
The Myelin Project - The Myelin Project works to accelerate research on myelin repair. Myelin is damaged by multiple sclerosis, leukodystrophy and the many other demyelinating disorders.
Call Again Soon - Directed at making life better for people affected by Leukodystrophy and those who know and love them.
United Leukodystrophy Foundation - Nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in their health.
Leukodystrophy - CHORUS document on the different types of Leukodystrophy. A little technical.
Aicardi-Goutieres Syndrome - News, descriptions, contacts, and other information concerning this leukodystrophy.
Devoted to Brianna - Medical experiences and terminology helpful for parents to understand and cope with genetic disorders. One little girl's story, concerning Canavan Leukodystrophy offers help and hope to many.
Leukodystrophy - A short information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Undiagnosed Leukodystrophy - Lauren's homepage, a six year old from Melbourne, Australia with an as yet undiagnosed neurological condition thought to be genetic.
Family Village / Library / Leukodystrophy - Resources on Adrenoleukodystrophy, Alexander Disease, Canavan Disease, Krabbes Disease, Metachromatic Leukodystrophy, and Refsum's Disease.
Leukodystrophy Hub - A brief definition followed by links to research articles, overviews and case reports.