making a difference today
Helping Tasmanian
Families live with
Muscular Dystrophy
And Allied Neuromuscular disorders
Muscular Dystrophy Tasmania are determined to make a difference to people affected by the various forms of Muscular Dystrophy and Allied Conditions.
If you, or your child have a neuromuscular condition please register with us.
Muscular dystrophy is a neuromuscular, genetic disorder which results in the progressive deterioration of muscle strength and function. The most common form in childhood is Duchenne Muscular Dystrophy, which can see a young boy using a manual wheelchair by the age of 8, and being completely dependent on an electric one by his early teens. Life expectancy for this disorder is usually only until early adulthood.
There are many other types of neuromuscular disorders, affecting people of all ages. While most forms of muscular dystrophy occur in babies or children, some others appear in late adolescence or adulthood.
Muscular Dystrophy Foundation Australia (which is the peak body and national voice for the neuromuscular community) estimates that there are more than 40,000 people with an NMC in Australia. Based on Tasmania’s share of the national population – MDFA’s estimate is that there are likely to be close to 1,000 people living with a NMC right across Tasmania
Researchers and doctors are learning more about the causes of muscular dystrophy and various treatments are being trialled to stop the progression of the disease. Nonetheless, through early diagnosis, proper therapy and support an increased quality of life is possible.
UPCOMING EVENTS - Watch this space!
Flying with a Neuromuscular Condition? This New Resource Can Help
For many people living with a rare disease or neuromuscular condition, travelling by air can be stressful and complicated. From mobility equipment and medical needs through to airport accessibility and support requirements, there are often extra challenges that most travellers never have to think about.
To help address these issues, Rare Voices Australia has released a new resource as part of its nationally co-designed Rare Disease Disability Toolkit. The guide, Navigating Air Travel with Rare Disease Disability, has been developed to help people travel more safely, confidently and with a better understanding of their rights and available supports.
The resource includes practical guides, checklists, medical documentation templates, caregiver resources, information for travelling with mobility aids, oxygen or PEG feeding equipment, and tools to assist with airport screening and accessibility requests. It has been created with input from people living with rare disease disability and those who support them.
For members of the MDT community who travel for medical appointments, family visits, holidays or advocacy work, these resources may provide valuable information to help make the journey easier and less stressful.
You can explore the toolkit and download the resources here
