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Supporting people affected by Charcot-Marie-Tooth disease.

Managing CMT

Living with a disability can be difficult, particularly a long-term condition like Charcot Marie Tooth Disease, which may change over time. You may find that at different times in your life you face different problems or you may find that a task you have been dealing with perfectly well for years becomes more awkward.

However CMT affects you, somebody has probably dealt with that particular problem before and there is invariably an answer, technique, or method for tackling it so that you can live life to the full. It may take time to find the right solution for you, but do ask.

Remember, you are not alone and there are people who can offer support when you need it. Apart from your friends and family, many people with CMT are willing to share their experiences and methods of overcoming the difficulties you may face. As well as Charcot-Marie-Tooth UK, there are a number of other useful voluntary organisations, not forgetting healthcare professionals.

What you can do

You are the person who best knows how your CMT affects your body on a day-to-day basis. If you don’t take responsibility, no one else will. For more on this, see Coping with CMT,.

Professionals such as doctors and social workers, are there to offer specialised advice and support on issues like treatments, drugs and benefits, but they will only be with you for short periods. The rest of the time your wellbeing, both physical and mental, is in your hands. You understand how symptoms affect you, both mentally and physically, which makes you the best person to keep tabs on any changes in your condition.

You can use your personal understanding to:

  • feel more confident and in control of your life
  • manage your condition and its treatment in partnership with healthcare professionals
  • help prevent further complications
  • communicate effectively with professionals
  • become more realistic about the impact of your disease on you and your family
  • lead a fuller life

Remember that getting the right information about CMT is important, helping you to make informed decisions for yourself.