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Charcot-Marie-Tooth Disease
Although a lot of activities, especially skiing and snowboarding may become more difficult to do; there are ski schools and other organisations that will be able to help with your skiing, cycling, hiking etc. as and when your physical condition deteriorates.
Tessier Adaptive Sports Equipment produces sit-skis both for independent use and for having the pleasure of being guided on the slopes with family and friends - allowing you to continue to have that all-important inclusive ski or winter holiday. In Austria and other countries one can also use other adaptive ski equipment. The GotoSki is another piece of ski equipment that might also be suitable.
Sensory walks, photographic walks, non-sporting experiences and activities are so inclusive now and very life-enhancing! Gourmet and wine trips; water colour painting; well-being and health related days out in the mountains - what is there not to like?!!
With the great choice of E-bikes now available, they too can help you continue to enjoy the mountains in summer. If your condition degenerates beyond that capability, then there are other options for being on the mountain!
Keeping a sense of inclusivity and having access to specialist support, advice and equipment will ensure that, however much one feels the body is failing, that there are ways of continuing to enjoy life - just using a different method!
We are currently working on the content for this page. Please contact us for information on assisted mountain activities if you or someone you know has Adaptive Disabled Skiing and mountains activities adventures for those with Charcot-Marie-Tooth Disease.
Charcot-Marie-Tooth disease (CMT) is a group of inherited conditions that damage the peripheral nerves.
It's also known as hereditary motor and sensory neuropathy (HMSN).
The peripheral nerves are found outside the main central nervous system (brain and spinal cord). They control the muscles and relay sensory information, such as the sense of touch, from the limbs to the brain.
People with CMT may have:
muscle weakness in the feet, ankles, legs and hands
an awkward way of walking (gait)
highly arched or very flat feet
numbness in the feet, arms and hands
The symptoms of CMT usually start to appear between the ages of five and 15, although they sometimes don't develop until well into middle age or later.
CMT is a progressive condition. This means the symptoms slowly get worse, making everyday tasks increasingly difficult.
Read more about the symptoms of CMT
What causes CMT?
CMT is caused by an inherited fault in one of the many genes responsible for the development of the peripheral nerves. This fault means the nerves become damaged over time.
A child with CMT may have inherited the genetic fault responsible for the disease from one or both of their parents.
There's no single faulty gene that causes CMT. There are many varieties of CMT that are caused by different genetic faults and these can be inherited in several different ways.
The chances of passing CMT to your child depend on the specific genetic faults you and your partner carry.
Read more about the causes of CMT.
(+information taken from www.nhs.uk/conditions/charcot-marie-tooth-disease/)
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