Devon

[sky456]

Is their anybody in Devon that has cmt,? I can't seem to find anyone down here with it, and would be nice to meet for coffe/tea ???

[kitbo21]

Hi, am sure there are.. Have you been on Facebook? as there are so many regional Groups for CMT.

Good luck

.

Catherine Xx

[keefer12]

Hi Sky, l live in London and here it's hard to find a local cmt group. Are you a member of CMT UK? There ma be a group near you which you can contact. Otherwise you can have a go at starting your own. Good luck, l know how isolating it can feel.

[PhilC in reply to keefer12]

In spite of the fact that CMT is the most common inherited neurological condition it is amazing how few fellow sufferers I see, even more amazing how few G.P's know anything about the condition ! Says a lot about the NHS.

[keefer12 in reply to PhilC]

Hi Phil, wouldn't blame the nhs personally, after l was diagnosed l had brilliant support from the nhs. Your absolutely right about the low profile and l'm working on that on behalf of cmt UK. We are currently in the process of putting together a raise awareness film, using humour, that can be used both publicly and professionally. It is in it's early stages but we are hopeful.

[PhilC in reply to keefer12]

Great to hear that, in East Sussex we get near zero support except podiatry services which are great. I couldn't even get my GP to review my three sons even though it was obvious at least one was effected

[keefer12 in reply to PhilC]

HI Phil, l believe others have had similar experiences. Will keep you posted on the film. Are you a member of CMT UK? You could join our Facebook friends group.

[REGreen in reply to PhilC]

Hello Phil,

The NHS in Scotland is fine once they know what you have, but getting diagnosed is hopeless. What do they teach trainee GPs? One said to me "Well it is vanishingly rare, so you can't expect me to have seen it before" Was it too much to hope he might have heard of CMT, or at least recognise the symptoms as something that needed referring to a specialist? I have volunteered as a specimen for student doctors in their practical exams, but haven't been asked to display my feet yet. Whenever our GP has a trainee sitting in I show them a pair of CMT feet and ankles and ask them not to forget once they are in practice. Awareness is very low so we all have to try and do our bit to raise the profile of CMT.

Best wishes,

REGreen

[PhilC]

Great idea but with G.P's it's a case of "you can take a horse to water but you can't make them drink"!

[HorshamMalc in reply to PhilC]

My daughter started a dentistry degree at Cardiff University last September. For the first year the dentists and medical students follow the same basic syllabus and share most of their classes. Within a month of starting they were introduced to neurology and the prime subject of their study was CMT. Apparently it's a good example of a type of neuropathy for academic study. My daughter (not a CMT sufferer) was the only student who'd ever heard of it before but, perhaps, things are looking up for the recognition and understanding of this condition by the doctors of the future!

[Amanita]

That's tremendous news, Horsham Mac !

[scooby58]

my sis-in-law lives in Torquay, she works with a guy that has it.....

[Naiomi]

Hey I know you put your message up a long time ago, but would like to meet other people with CMT in Devon.

[Djbomer in reply to Naiomi]

Hi I'm in Plymouth and willing to meet up .looking forward for a chat. Dave

[Paul_plymouth]

Hi I live in Plymouth and I suffer with CMT but it’s one of those things you don’t shout about to a lot of people and it’s hard to find other people with the same disease as you

[Djbomer in reply to Paul_plymouth]

Hi Paul l replied a few weeks ago. I am in beacon park Plymouth and have been diagnosed with cmt for 30years. I attend mount Gould podiatry department. Be in touch Dave