Told I was lazy and useless
Neuromuscular Diseases and an expert in CMT, says: “CMT has many different characteristics but commonly there is a loss of muscle and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages.
“These lead to a range of orthopaedic complications, leading to a variety of mobility and dexterity problems and sometimes scoliosis.”
SHE adds: “It is important to determine exactly what kind of CMT someone has in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient.
“Many people put up with CMT for a long time thinking they are clumsy or have funny feet, suffering in silence when they could be receiving help.”
Karen Butcher of the charity CMT UK says: “Sometimes the symptoms aren’t so obvious but due to the fact that CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip or fall over and are constantly tired.”
Early diagnosis can improve the lives of those with the condition as it can be managed more effectively. Because CMT is genetic there’s a 50 per cent chance it can be passed on from a parent to a child. Tests showed that both Rose and Olivia had the condition.
“It was the biggest relief I could ever imagine, a simple piece of paper telling me my symptoms had a name and I was suddenly normal,” says Rose, who also suffers from hypermobility and arthritis.
“At the same time, though, I was angry at my dad for having made out I was useless and lazy all my life.”
She adds: “I’m relieved my children don’t have to go through what I went through. They have amazing school support and teachers who want to help them thrive. They are looked after brilliantly.”
September is Charcot-MarieTooth awareness month. To find out more about the condition visit cmt.org.uk or call 0800 6526316. You can donate by visiting justgiving.com/CMT