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Leukodystrophy
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Back of Bradford's van Mississippi River Challenge for Rett Sydnrome and Leukodystrophy, 2003

Leukodystrophy refers to a group of genetic disorders that are characterized by the imperfect development or maintenance of the white matter (myelin sheath covering nerve fibers in the brain).  The myelin sheath is an extremely complex fatty substance made of many components.  Each of the leukodystrophies affects one of these components.
 
The most common signs seen in most leukodystrophies include gradual changes in an infant or child who previously appeared well.  Changes may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, behavior, memory, or thought processes.  The symptoms, which vary according to the specific type of leukodystrophy, may be difficult to recognize in the early stages of the disease.

Cause
Most of the leukodystrophies are genetic, meaning they’re passed down from parent to child.  There are spontaneous cases of leukodystrophy, but that is rare.

What is the prognosis?
There is no cure for most kinds of leukodystrophy.   The prognosis for the leukodystrophies varies according to the specific type of leukodystrophy.  While every leukodystrophy is different, the most common problem is a child’s health gradually worsening in some way, even though they seemed fine to start with.  

Is there any treatment?
Treatment depends on the type, and doctors address the symptoms.   Treatment for most of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational and speech therapies, and nutritional, educational, and recreational programs.
In some cases, a bone marrow transplant can help by slowing or stopping the progression of the disease. Scientists are also researching whether replacing certain enzymes can help treat some kinds of leukodystrophy.

MORE INFORMATION:
United Leukodystrophy Foundation
Clinicaltrials.gov
Pubmed - Leukodsytrophy

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Team Hope crew and paddlers with familiies during the 2003 Mississippi River Challenge for Rett Syndrome and Leukodystrophy
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