Leukodystrophy

About Leukodystrophy

Leukodystrophy refers to a range of conditions that affect the myelin, or white matter, of the brain and spinal cord.  There are over 40 identified conditions and because of this large number of variations, there is no typical age for onset of the condition and the pattern of symptoms will vary greatly. All types of leukodystrophy are considered to be progressive and there is no remission period as may be seen in other neurological disorders.  There is no cure for leukodystrophy but depending on the type of leukodystrophy, there may be ways of managing the condition.

Adjusting to life with Leukodystrophy

The symptoms of leukodystrophy will be different for each person, and diagnosis is often difficult as symptoms can be associated with many different disorders.  Some symptoms may include:

• Loss of hearing and/or vision
• Changes in body tone and movement
• Changes in gait and balance
• Changes to speech and ability to eat
• Behavioural, memory and cognitive changes

For people with Leukodystrophy the help of families, friends and carers is vital.  Symptoms can vary and the need for support can change and increase over time.

A person with leukodystrophy may require support with:

• Enhancing independence, including help around the home
• Visiting and maintaining contact with family and friends
• Participating in social and recreational activities
• Financial advice
• Exercise and health programs
• Access to therapy support, aids or equipment to keep you safe and maintain your independence
• Mental health support