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Neuromuscular disorders and advocacy 

Neuromuscular disorders and advocacy
Chapter:
Neuromuscular disorders and advocacy
Author(s):

Elaine C. Jones

, and John D. England

DOI:
10.1093/med/9780198796039.003.0022
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date: 26 August 2019

Neuromuscular disorders are a wide encompassing group of diseases that affect the nerves, muscles, and neuromuscular junctions but they can also affect cranial nerves, autonomic systems, and cause fatigue and even cognitive deficiencies. Patients with neuromuscular disorders can have a wide range of symptoms that create barriers to daily functioning. It is important that they not only to have access to good diagnostic and therapeutic care, but also management of the sequelae of the disease including disability access, educational support, nutritional support, and others. This is where advocacy becomes vital. Advocacy has a broad definition and includes access to care, but also requires working with governmental bodies to ensure laws and legislation prevent discrimination. This chapter will look at the advocacy needs of neuromuscular patients and will offer resources to help. Case study examples will demonstrate empirical observations of how advocacy efforts can be employed to help.

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