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Managing your condition

Information to help you manage your muscle wasting condition. Exercise, managing your fatigue, mental health support, and navigating your neuromuscular care. From the point of diagnosis to living the best life possible.

Neuromuscular Care

Discover local services for both pediatric and adult neuromuscular care. Explore our user-friendly care plan designed for you and your neuromuscular team. Discover our Centers of Excellence, acknowledged for exceptional neuromuscular care.


Researchers have not yet identified the optimum amount, and type of physical activity or exercise for people with muscle wasting conditions. However, it’ is widely agreed that being inactive is harmful to health and being active in whatever way you can be, is good for you. Here is the information that we have.

Mental health support

Mental health refers to our emotional, psychological, and social wellbeing. Our mental health impacts on our thoughts and feelings, and how we act and behave. It also influences how we respond to stress, how we interact with others, and the choices we make.


Fatigue is a feeling of constant, overwhelming exhaustion, and weakness. It is a symptom of underlying conditions and not a condition itself. This means that it’s quite common for people with neuromuscular diseases to experience fatigue.

Postural care

If you have a muscle wasting condition and have difficulty moving around, or you need support to maintain your position when upright or with repositioning, you may be at a greater risk of developing problems with your posture.


For most people affected by muscle wasting and weakening conditions, the pathway to getting a diagnosis starts with seeing your GP. Following that appointment, you may be referred for further tests which may help to determine a diagnosis.

Pressure Ulcers

Pressure ulcers, also known as bed sores or pressure sores, are areas of damage to your skin and underlying tissue that develop from lying or sitting in one place for a long time without moving.


Sometimes you may need to have a local or general anaesthetic for a medical procedure. If you have a muscle wasting or weakening condition or a family history of a muscle wasting or weakening condition, it’s essential to let your anaesthetist know in advance so they can carry out appropriate tests and take necessary precautions.

We’re here to support you

Our support services

Webinars, Information Days, and support groups for our muscle wasting community. Our life-changing support is here for you.

Call our helpline

Advice for living with or caring for someone with a muscle wasting condition.

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