Settle's Sam Lewis blogs for CMT Awareness Month on living with the disease

A WOMAN from Settle is spending September letting the world know what it’s like to live with a debilitating condition which has greatly affected her mobility.
Sam Lewis was diagnosed with Charcot-Marie-Tooth Disease (CMT), an incurable neurological disorder affecting mainly the legs and arms, at the age of five.
And since she lost her job as a software tester with Skipton Building Society in 2011, the 33-year-old has gained fans all over the world with her pithy and engaging social media messages.
As ‘The Crippled Crafter’, Sam has been blogging about her daily life coping with the disease for several years, as well as advertising the arts and crafts products she creates which have helped her to cope with having the condition.
Throughout September she is using social media to try to raise awareness of what it means to live with the condition, as part of CMT Awareness Month. The condition is named after the three physicians who first identified it in the 1880s.
Sam said: “CMT is a degenerative condition which affects the nerves in your arms and legs and the transmission of signals along the ‘command pathways’ to the brain. This leads to weakness and wasting of the muscles, and deforming of feet, legs and hands. I need crutches and a wheelchair or scooter to get around.
“CMT can strike anyone at any time and there are thought to be around 25,000 people in the UK with it, though many do not yet know they have it. It is genetically inherited, and there is a 50/50 chance of actually getting it. It is progressive, meaning it is getting steadily worse as I get older.
“I am adopted and my dad is a GP so he diagnosed what it was when I was five and was tripping up all the time. Much later I found that my birth mother and my birth siblings have CMT too.”
Sam has had surgery to help her walk better over the past two years. She had made and sold greetings cards as a hobby but decided to expand her creativity after being made redundant in 2011. Since then she has added lots of ‘mixed media’ art creations, soft toys and cushions to her range.
Ten per cent of the profits from everything Sam sells goes to the charity CMT UK.
She said: “I am blogging every day throughout September just to try to give people an understanding of what CMT means to those who have to live with it. I chose the name ‘The Crippled Crafter’ because I wanted to reclaim the word ‘cripple’ from the negative connotations it had.”
Sam’s online blog can be found at: thecrippledcrafter.blogspot.com. For more information on CMT, visit cmt.org.uk