When you first contact Charcot-Marie-Tooth UK, the chances are that you have just been diagnosed with Charcot-Marie-Tooth Disease and are worried, scared and uncertain as to your future.
As far as we can, bearing in mind that we are not medically qualified, we will try to reassure you and provide you with basic information, by post, phone, email or via this website, in order to allay your immediate fears. Over the years, we’ve acquire a vast array of knowledge about CMT, and we are more than happy to share this with you. Much of it can be found here on this website.
Most of the Trustees have CMT, so we know what you are talking about, and understand exactly the problems that you’ll face. Sharing an experience is often the best way of coming to terms with a particular problem, and having CMT is no different. It can be very isolating, having a condition that no one has ever heard of, so by just coming here today, you’ve “joined” a community of thousands of people with CMT worldwide.
We have links with the very few Neurologists around the country who know about CMT, and can provide you with their name – but you will obviously still require a referral from your GP. However, do bear in mind that if we all head for the same few neurologists, all it will do is make their waiting times longer, and longer and longer…. ! As frustrating as it may seem, perhaps spending some time educating a less knowledgeable neurologist might be worth the effort in the long run.
We are a membership-led organisation, with a number of benefits exclusively for members. To find out more about our membership schemes, please click on How to Join, and read more. You are still free, of course, to access this website, call us, email for information, but there is much more available to you if you become a full member.
Your membership is crucial to us – subscriptions are a source of reliable income and pay for all the day to day costs of the organisation, like rent, electricity and salaries – all the boring stuff, without which we cannot exist.
One of the organisation’s long term aims is to arrive at a point, in the future, where the medical profession are knowledgeable about CMT, and are therefore able to provide you with relevant and timely information and advice. To this end, we maintain contact with medical professionals of all kinds around the country; attend professional conferences (when funds allow) and run mailshots. However, it is an uphill task, and your assistance is always welcomed – even just taking a leaflet into your GP helps.
We also have an Awareness Month every September, collaborating with a number of international organisations from all over the world. During this month, our PR Consultant, Paula, endeavours to get as much regional and (hopefully) national publicity as she can, and we try to organise various events – “real” and online – to get the word out there in the wider community. All the information you’ll need about that, and how you can help, can be found in the Awareness section of this website.