Managing a condition

There are variations, of course, between different individuals and different conditions but there are some common issues when it comes to managing conditions:

Contents:


Anaesthetic risk for some conditions

Be aware that some muscular dystrophies may carry anaesthetic risks. Ask your specialist if this is applicable to you and your condition. For more information, please read the Muscular Dystrophy Campaign's factsheet on anaesthetics.

Anaesthetics factsheet

Condition specific support groups

Consider making contact with the relevant condition specific support group. Visit the link below to see a list.

List of support groups

Expert Patients Programme

This NHS-run scheme can enable you to better understand your condition. Visit the link below to find details of local courses that can build up your confidence, skills and knowledge.

www.expertpatients.nhs.uk

Get advice

Make sure you have good advice on social issues such as housing, educational and employment opportunities, benefits etc. For more information look at the relevant sections of the Support Search.

Support Search

Get a precise diagnosis

If you are not sure about your diagnosis or if it was made some time ago, it is well worth being reassessed. You can ask your GP for a referral to a specialist.

The Muscular Dystrophy Campaign funds Muscle Centres. Based in hospitals, the Muscle Centres are staffed by doctors, nurses, therapists and other professionals who are experienced in neuromuscular conditions.

You can download a list of Muscle Centres as a PDF document.
The List of Muscle Centres (80 kb) [pdf]

Heart and breathing

Some neuromuscular conditions may lead to heart or breathing problems. The Muscular Dystrophy Campaign has produced two factsheets about heart and respiratory issues:

You can also ask your specialist for more information.


Regular follow-ups

Regular follow-up appointments with your specialist are very important as they can mean that predictable problems or complications are detected and treated at an early stage. Ask for a referral from your GP to see a neurologist or other specialist, and do try to see them regularly - usually at least twice a year.

Staying active and healthy eating

Even if you can't do extensive exercise it is always good for your general health to stay as active as you can. Avoid long periods of immobilisation, especially after breaking a bone, for example. Physiotherapists will be able to provide specialised advice on how to stay active.

The Muscular Dystrophy Campaign has produced three relevant factsheets:


Understand more about your condition

More information about different neuromuscular conditions and the full list of the conditions covered by the Muscular Dystrophy Campaign.

About your condition

Understanding the genetics

This document, from our Information Pack, contains details about the science and the genetics of neuromuscular conditions:
Introduction pack 2. The Science of Neuromuscular Conditions Oct 07 (176 kb) [pdf]