Sisters launch helpline for rare medical condition

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Two sisters have set up a community interest company offering support to fellow sufferers of a rare condition which significantly affected the life of one of them following a spinal injury.

Cauda Equina Syndrome is a neurological disorder resulting from the compression of a cluster of nerves at the base of the spine and can occur after a slipped disc. The nerves control leg, bladder, bowel and sexual function.

Claire Thornber (42) suffered a slipped disc in 2010 and went on to develop the debilitating condition, which ​specialists now estimate ​affects ​1,000 people a year in the UK.

Claire, a mother-of-two, said: “After doing some research, I realised there was no support at all for sufferers of the condition, and as a result it was hard to find out how to get in touch with anyone going through the same thing.”

With help from her sister Liz Johnson (37), Claire set up a 24-hour helpline from her home in Billington, along with a soon to be relaunched interactive website. A network of fellow sufferers now numbers over 500 nationwide.

Claire added: “We hold support meetings around the country, helping sufferers to cope with their condition and socialise with people who have similar issues. Our members need emotional support, too, as their life changes so much as a result of the condition, with some people becoming wheelchair bound.”

A priority for the association is to raise awareness of this rare condition. It aims to ensure that CES becomes a household name and that everyone, including health care professionals, are aware of the Red Flag Symptoms detailed on its website, to aid early diagnosis.

l For more information or to view the symptoms, visit For help and support, call the helpline on 03335 777 113.