Hi there, my name is Doug, and I’m a member of Charcot-Marie-Tooth UK, welcoming you to our CMT website.
You may be a regular caller, a member, someone who is thinking of becoming one, or someone with symptoms undiagnosed and unrecognised, frustrated by the numerous doctors, nurses, consultants, alternative therapists, friends and family and so on, who cannot provide the answers you require or perhaps you have an inkling that CMT may be worth investigating.
What is CMT? Who knows unless they have been diagnosed or know someone who has. Many people who have CMT don’t know they have it, from the very young to the very old. I was diagnosed, after some difficulty, with cmt when l was 62, and what a blessed relief it was. No more wondering what those strange sensations are: the cramp, the numbness, the wobbles, the fiery feet, and for some, the pain undiagnosed. All those tests and wrong headed prescriptions and referrals. Some of us even have operations on our limbs without knowing the cause.
CMT is a progressive, genetic disease which causes damage to the long peripheral nerves to the hands and feet. It is not life threatening but can affect your quality of life. It will affect your mobility and hand coordination to varying degrees of severity and progresses at different speeds. It is estimated one in 2500 have this disease in the UK.
We are a place to come and talk about how you’re feeling: physically, and in every other way. We understand because we also live with CMT and have the same or similar symptoms. You can discuss your children or perhaps there are other family members who may be having symptoms, and you need to discuss getting these recognised, or you may have CMT.
We have over 1300 members in the UK, with 3 active Facebook groups offering every kind of support and information. We have a three times a year magazine containing our members experiences. We have an office and a phone line open during office hours (10am to pm) with staff well trained in talking to our members, or anyone who wants to know about CMT, or discuss any issues you may have.
Your membership subscriptions will go towards providing all these services and more. Some of your fees will also go towards researching this inherited genetic disease. We also have a yearly conference, and at a discounted rate for paying members.
We will endeavour to support you to improve your quality of life. How do you get the right orthotics, for example, what is that pain and what can l do to alleviate it? What is the right approach when seeing a consultant, your GP, your employer, that disability advisor. What disability benefits am l entitled to? What assessments do l need, how do l appeal?. Is the doctors prognosis correct? What rights do l have at work, should l continue working?
So many questions. We can’t tell you that we have all the answers, but if we don’t, then perhaps you’ll find the answer through others like you on our Facebook groups, or maybe we’ll know who to answer the question correctly.
Listen to a podcast about CMT, talking about symptoms, management, benefits and lots more:
Watch this video with Tony, Jade and Lisa talking about CMT and how Charcot-Marie-Tooth UK helps:
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