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Sunday, 23 June 2024

Cauda Equina charity set to celebrate their annual awareness day

CAUDA Equina Champions Charity (CECC) will be hosting their official annual awareness day on 1st October 2022 supported by the launch of the brand-new book – ‘The Lost Tribe’. 

‘The Lost Tribe’ is the first book the charity has launched and will aim 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, written from the heart of medical experts, CES patients across the nation, plus the charity’s celebrity sponsor and fellow CES patient – Duncan James.

The charity launched the awareness day in 2020 and has since gained the support of two celebrity ambassadors: Duncan James and Storm Keating. Both of them have been diagnosed with Cauda Equina Syndrome (CES) and want to help other people spot the red flags as soon as possible.

The red flags of CES include:

–       Bladder issues

–       Irregular bowel movements

–       Severe back pain

–       Leg weakness and numbness (bilateral)

–       Saddle numbness

– Sex-related problems

Failure to identify ‘Red flag symptoms’ and get the right treatment within 24 hours can lead to devastating progression of the syndrome.

Claire Thornber, Founder of Cauda Equina Champions Charity said: 

“We are extremely proud to launch our unique charity book. We have asked some of our charity members to share their personal stories to help; those who are newly diagnosed, healthcare professionals, family members and carers understand this debilitating condition. We also want to show that these people who were busy living their lives and achieving great things have gone on to live their BEST LIVES despite CES.

“From my own personal experience and from my work at the charity, I know that when you are newly injured as a Cauda Equina Syndrome patient, the burning questions you want answers to are: “How long till I recover?” “Will I ever recover?”, and “What is normal after surgery?”.

“We know that living with the hidden disabilities of CES can be isolating and often family members do not understand it at all or are too afraid to ask. We hope this book will be valuable as a resource to help reassure new patients about what to expect, what to aim for and to know they are not alone. Many CES patients are abandoned without the support and follow-up care, but finally, there are steps being taken within the NHS to develop a new pathway and the difficult issues we collectively face, hopefully, will be much less of an issue for CES patients of the future”.

The Cauda Equina Syndrome Awareness Day takes place on Saturday 1st October and will run mainly on the charity’s Twitter page – @caudaequinacesa.

The Lost Tribe’ will be released on Amazon on October 1st 2022 for paperback RRP £6.99 and Kindle for RRP £3.99.

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