What is Muscular Dystrophy?
Muscular Dystrophy (MD) is an ‘umbrella’ term that refers to a group of rare, complex, genetic conditions within a wider group of more than 75 conditions collectively referred to as neuromuscular conditions (NMCs). NMCs cause progressive deterioration of muscle strength and function and commonly result in profound physical disability.
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 NSW’s share of the national population – MDFA’s estimate is that there are likely to be more than 13,000 people living with a NMC across NSW
Neuromuscular conditions can affect people at different stages of their lives and onset of symptoms can occur from birth to adulthood, depending on the condition. The rate of progression and pattern of inheritance also varies depending on the condition and the individual.
This fact sheet explains how neuromuscular conditions affect people.
But I don’t have Muscular Dystrophy
Muscular Dystrophy NSW supports people with Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, Myotonic Muscular Dystrophy, Friedreich Ataxia, Becker Muscular Dystrophy, Charcot Marie Tooth Disease, Facioscapulohumeral Muscular Dystrophy (FSHD), Limb Girdle Muscular Dystrophy and many other neuromuscular conditions.
For a full list of neuromuscular conditions supported by MDNSW, read page 2 of this fact sheet.
What’s in a name?
As scientific understanding of neuromuscular conditions deepens and advances, the terminology changes with it. Neuromuscular Condition is now the preferred term for Muscular Dystrophy in its many forms.
We’re still known as Muscular Dystrophy NSW, because the broader community has an understanding of this term, but many people aren’t familiar with the term, ‘neuromuscular condition’.
Types of Neuromuscular conditions
To learn more about the most common neuromuscular conditions, read our Fact Sheets, linked below. These fact sheets can be useful tools to help your NDIS planner understand your current and future support needs.