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Leukodystrophy

Learn about Leukodystrophy and how MS Queensland can provide assistance and support.

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

How MS Queensland can help

MS Queensland has a long history of helping people with MS and other progressive neurological diseases such as leukodystrophy. We know that many of the symptoms of and treatments for MS are also common to other PNDs and we offer our knowledge, expertise and understanding in this field to a broad range of people.  Some of our services include:

  • Service coordination
  • NDIS access assistance
  • Neurophysiotherapy
  • Accommodation
  • Employment services

Learn about our services & support

How to get help

For more information, questions, or assistance you can contact our NeuroAssist InfoLine on 1800 177 591 Monday – Friday between 7:30am – 6:30pm.  You can also request a call back from one of our NeuroAssist team who will be in touch within 24 hours.

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