The Lost Tribe – Stories from survivors of Cauda Equina Syndrome

Through the charity helpline I realised not everyone could or wanted to access Facebook. There was so much valuable information in the group from shared experience to help those on the difficult quest for answers, I knew I needed to share this information more widely and make it accessible outside the online group.

For CES awareness Day in 2021 we created an online festival and had asked Mr Mecci from The Golden Jubilee Spinal Injuries Centre in Middlesbrough if he would present his thoughts on best practice for cauda equina syndrome patients and share them with our attendees.

I listened to Mr Mecci’s presentation about sharing good practice in cauda equina syndrome and of providing much needed services for his patients at The Golden Jubilee Spinal Injuries Unit in Middlesbrough.

His powerful words describing CES patients as a “lost tribe” really resonated with me and were so very true of our community. These words inspired me for the title of a book I had long been mulling over and fuelled me into collecting stories from brave members of our group. These people, who despite having their dreams for the future shattered by CES, had found ways to overcome this and carve out new purpose and lives for themselves.

When you are newly injured through cauda equina syndrome adjusting to issues such as continence problems, mobility issues, chronic pain and sexual dysfunction can be terrifying and overwhelming. I wanted to show people life wasn’t over and that they could find happiness again. It was also very important to provide a resource that could be shared with family members and healthcare professionals so they could truly understand the impact of CES and be better informed to support people affected by it.

When we released the book, it quickly reached number 1 in the Living with disability category on Amazon books and received some wonderful reviews – you can order a copy here, all proceeds go to Cauda Equina Champions Charity.