Treatment for muscular dystrophy focuses on reducing the disease’s effects on joints and the spine, and managing its effects on daily life.
Your treatment and supports should be unique to you and how muscular dystrophy affects your life. For example, some people may need a walker or wheelchair, while others will need physiotherapy and occupational therapy to treat the muscles and joints. All these forms of assistance can be arranged by your NDIS service providers.
Medications may be used for some types of muscular dystrophy to slow the disease down. These should be discussed with your treating doctor.
It is a good idea to find a general practitioner (GP) near you who can provide regular check-ups and offer long-term support.
You can also apply for access to the National Disability Insurance Scheme (NDIS). The NDIS funds the supports and services that you need to manage the effects of muscular dystrophy on your daily life through supported independent living assistance. It is a good idea to apply as soon as you get a diagnosis.
If your child under seven hasn’t been diagnosed yet but is not meeting developmental milestones, contact your local NDIS Early Childhood Early Intervention (ECEI) partner. They will connect you to supports and give you more information about the NDIS.
Find out who to contact about the NDIS where you live.
Muscular dystrophy affects families and carers, too. It is important carers get assistance so they can continue caring for loved ones. Carer supports are available through:
Families may wish to explore genetic testing and counselling. Genetic counsellors can help you understand what a diagnosis means for you and your family, and give you information about what genetic testing options are available. Genetic counsellors are trained health professionals who will be sensitive to your circumstances. The Genetic Support Network of Victoria can put you in touch with these practitioners wherever you live across Australia.
You can also contact your doctor to discuss getting a mental health treatment plan, or a mental health support organisation to speak to someone directly.