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 disability.
Approximately 40,000 people across Australia live with muscular dystrophy or other NMCs, with an estimated 13,000 affected in NSW alone.
To address some of the issues identified by people with neuromuscular conditions in getting appropriate and adequate funding in their NDIS plans, we have developed a series of plain English fact sheets on the most common conditions.
These fact sheets can be used as a basic training and education tool for people who are newly diagnosed, living with a neuromuscular condition or for their families and carers.
The sheets can also be used by others involved in their lives such as NDIS Local Area Coordinators, NDIA planners, therapists, service providers and support workers.
You will find these fact sheets useful in the NDIS planning process and can include a copy of the fact sheet with your planning information.
The fact sheets include:
- Information on conditions in plain English
- Information on how the condition can affect the person
- What supports typically assist a person to be independent and fully participate in community life
- Interpreter access information and helpful links
Becker Muscular Dystrophy
Congenital Muscular Dystrophy
Duchenne Muscular Dystrophy
Facioscapulohumeral Muscular Dystrophy (FSHD)
Idiopathic Inflammatory Myopathies
Inclusion Body Myositis
Limb Girdle Muscular Dystrophies
Myotonic Muscular Dystrophy
Spinal Muscular Atrophy Type 1
Spinal Muscular Atrophy Type 2, Type 3, Type 4
More condition information can also be found at The Loop – your neuromuscular resource hub!
Hard copies of the fact sheets are available for members of MDNSW. Please contact us if you require copies.
Free call : 1800 635 109
Email : firstname.lastname@example.org