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Woman who was told she had a 'bad back' diagnosed with rare syndrome

Claire Thornber set up Cauda Equina Champions Charity and has now penned a novel about the syndrome <i>(Image: Claire Thornber)</i>
Claire Thornber set up Cauda Equina Champions Charity and has now penned a novel about the syndrome (Image: Claire Thornber)

A woman who compared her pain to "jumping from a helicopter and landing on a telegraph pole with a pineapple strapped to the top" has penned a novel to help others living with the same syndrome as her.

Claire Thornber was just 39 years old she was diagnosed with cauda equina syndrome (CES).

CES is a rare and severe type of spinal stenosis where all of the nerves in the lower back suddenly become severely compressed.

All it took was one turn in bed whilst sleeping in September 2010 and the sudden sharp pain that ran up Claire’s back told her that something was not right.

Lancashire Telegraph: Claire Thornber was 39 when she was diagnosed with Cauda Equina Syndrome
Lancashire Telegraph: Claire Thornber was 39 when she was diagnosed with Cauda Equina Syndrome

Claire Thornber was 39 when she was diagnosed with Cauda Equina Syndrome (Image: Claire Thornber)

The following day Claire, from Whalley, hobbled into A&E and was sent away and told to get some bed rest for having a "bad back".

She said: “Luckily, I wasn’t the sort of person to take anyone’s advice, and always follow the beat of my own drum.

“It was starting to affect how I lived my day-to-day life and things such as – queuing in a supermarket, cleaning my home or the offices I was hired to clean was just impossible”.

Knowing it wasn’t just a bad back, Claire did her own research and the results showed symptoms of CES but was quickly alerted to red flags that can leave you with a permanent disability if not treated as soon as possible.

These red flags include bladder issues, irregular bowel movements, severe back pain, leg weakness and numbness, saddle numbness, and sex-related problems.

Claire has since received a diagnosis, surgery, and recovery, and has set up her very own charity, the Cauda Equina Champions Charity, which has helped hundreds of people around the world.

She added: “Imagine jumping from a helicopter and landing on a telegraph pole with a pineapple strapped to the top – that’s the simplest way to describe the pain of Cauda Equina Syndrome.”

Since her diagnosis, Claire set up the Cauda Equina Champions Charity and has now penned a novel to spread awareness of the syndrome.

Lancashire Telegraph: Duncan James, member of British boy band Blue is also a CES survivor and is now the charity’s celebrity ambassador.
Lancashire Telegraph: Duncan James, member of British boy band Blue is also a CES survivor and is now the charity’s celebrity ambassador.

Duncan James, member of British boy band Blue is also a CES survivor and is now the charity’s celebrity ambassador. (Image: Flickr / Christoph Henrichs)

Duncan James, a member of the British boy band Blue, is also a CES survivor and is now the charity’s celebrity ambassador.

‘The Lost Tribe’ is the first book the Cauda Equina Champions Charity has launched and aims to educate sufferers of the syndrome, plus friends, family and even healthcare professionals who require further insight.

All proceeds of the book sales will be going to the charity to continue to raise significant awareness across the United Kingdom.

The book also contains individual stories including Claire’s, written from the heart of medical experts, Duncan James and CES patients across the nation.

‘The Lost Tribe’ is available on Amazon and is number one in the charity book chart - paperback RRP £6.99 and Kindle RRP £3.99.