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Shining a Light on Cauda Equina Syndrome: Our Journey Featured in 'All Together Now'

Allison Whitehorn, wearing glasses and a brown blazer, smiles while seated at an event. The headline reads 'You're not alone anymore' in bold yellow letters on a red background. The subheading states, 'Allison Whitehorn is providing a voice for victims of little-known condition.' A circular logo with a red spine is also visible.
Allison Whitehorn: Advocating for Cauda Equina Syndrome sufferers and providing much-needed support through CESCI. 'You're not alone anymore.

We are thrilled to share that our journey with Cauda Equina Syndrome (CES) has been featured in the latest issue of "All Together Now" magazine. This significant milestone allows us to spread awareness about CES and the vital support provided by our organization, CESCI (Cauda Equina Spinal Cord Injury).

My life changed overnight in 2014 when a disc compressed the nerves at the bottom of my spine, leading to a diagnosis of Cauda Equina Syndrome (CES). The impact was profound: I lost my mobility, and control over my bladder and bowel, and my career. My relationships were deeply affected, and I had to move house to accommodate my new reality.

After several years of living with CES, I realized there was a glaring lack of understanding and support for those affected by this condition. In 2020, my husband and I decided to take action and co-founded CESCI, a not-for-profit support group dedicated to helping others navigate life with CES.

We were astounded by the response. Our group quickly grew, revealing just how many individuals were struggling alone with CES. Our mission became clear: to show others that they are not alone. To this end, my husband and I travel across the UK to host meet-ups for our members. We also offer online support through ladies' and men's evenings and a wide-awake club for those, like me, who struggle with insomnia due to pain.

One of the most challenging aspects of CES is the lack of awareness, even among medical professionals. A survey we conducted with Bolt Burdon Kemp law firm highlighted this issue starkly: 65% of respondents said their GP does not understand CES or provide adequate support. Additionally, 60% feel they lack support for managing CES-related bladder incontinence, and 47% for bowel incontinence. Perhaps most concerning, 85% reported insufficient support for their mental health.

Despite the introduction of a new pathway from the NHS's GIRFT (Getting It Right First Time) programme, aimed at improving treatment and care, little has changed. This underscores the need for continued advocacy and awareness-raising.

CESCI has been a beacon of hope and confidence for me and many others. Our appearance in "All Together Now" magazine is a testament to the progress we've made and the importance of our mission. We are committed to advocating for those with CES for as long as we are able, ensuring that no one has to face this journey alone.

Thank you for being part of our journey and supporting our cause. Together, we can make a difference in the lives of those affected by Cauda Equina Syndrome.

Read the full article below on page 16, or visit

All Together NOW! Summer 2024
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