Professionals can miss
“isolating not knowing other people with CMT”.
Dawn said: “I was always very private about the condition and never talked about it until I found CMT UK, a charity for people with the illness.
“As odd as it may sound, it had never occurred to me to look up CMT on the internet but when I did, I found CMT UK and now I chat to people online who also have the condition.
“It is hard. When I go out I have to use walking sticks and people do stare – you don’t often see people my age with sticks.
CMT’s Chief Operating Officer Karen Butcher can trace CMT back six generations in her family.”
She said: “There are still too many medical professionals including GPs, physiotherapists, orthotists, surgeons – and even neurologists – who still don’t know what CMT is, therefore an integral part of tis year’s campaign will be to educate them about the condition so they can help make a diagnosis, if needed.
“It is also important for us to reach those who think they might have the condition, but haven’t been diagnosed yet.
“Sometimes the symptoms aren’t obvious, but due to the fact that CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip of fall over and are constantly tired.
“There could be many reasons for symptoms like these but if you have any it would be a good idea to ask your GP about CMT.
“Early diagnosis helps improve the lives of those with the condition.”
Dawn is now thinking of starting a family but worries about passing the condition on.
She said: “A family is definitely something I want for my future but there is guilt there about passing this on.
“It is a lot for a child to deal with – is it fair?
“I also worry about my abilities as a mother, running after a toddler, and the safety aspects of holding a small child when I have balance issues.
“But even with these issues, CMT is a part of me that’s not going away and I accept that now.
“It sets me apart from others. But I’ve just got to get on with it and hold my head high.”