Being diagnosed with a neuromuscular condition can be extremely overwhelming and at times will be frustrating. However, please rest assured that there is support and assistance beyond medical care available.
The best way for a newly diagnosed person to use this resource is;
- Contact one or more of the Patient Organisations/Support Groups listed
- Understand the diagnosed condition. There are a number of reputable websites which provide factual, accurate and up to date information on specific conditions. Ask your relevant Patient Organisation for assistance with this, to ensure the website you are accessing is reputable.
- Consider Counselling. Counselling may assist with understanding and acceptance of the condition.
- Consider joining a neuromuscular registry. Patient registries are databases that contain information about individuals affected by a particular condition. Having a state-wide, accurate registry is important for directing funding, research and clinical trial opportunities. Ask your Neurologist for more information.
Other topics you may find useful in the first 12 months of diagnosis are below. Please remember there are a range of further topics you may want to explore as time goes on. These can be accessed on the right of the screen.
- WA National Disability Insurance Scheme (WA NDIS) or National Disability Insurance Scheme (NDIS)
- Disability Services Commission
Support Groups, Support Programs & Patient Organisations
- Muscular Dystrophy WA
- People with FSHD & MD
- Spinal Muscular Atrophy (SMA) Australia
- CMT WA
- Save our Sons Duchenne Foundation
- FSHD Global
- Genetic and Rare Disease Network (GaRDN)
- Early Childhood Intervention Australia (ECIA)
- Carers Association of WA
- Young Carers WA
- Commonwealth Respite and Carelink Centres