Carolyn's story

My name is Carolyn and I live in Leicester. I first contacted the Brain & Spine Foundation back in October 2013 following surgery for a spinal tumour.

After I was discharged from hospital I felt very much on my own. I didn’t know anyone else who had had a spinal tumour and there was no one to talk to regarding my ongoing symptoms.

I came across the Brain & Spine Foundation by chance as I trailed the Internet and spoke to the nurses who were really helpful.

It was really reassuring having someone to speak to and someone that understood how I was feeling and gradually as I began to feel stronger I felt I wanted to actively get involved with fundraising and campaigning.

Writing has been a wonderful way to put aspects of my neuro journey into perspective, having lived with the knowledge of the tumour for four years before finally having surgery. I am now peer support facilitator for Neuro Writing, Neuro Social (Midlands), Neuro Social (UK-wide) and Neuro Creatives. I am also a Brain & Spine Foundation’s Ambassador & Trustee; was awarded the winner of the Black History Month Black and Asian Woman’s 2021 poetry competition (Leicester) and was the runner up in the Black and Asian Woman’s poetry competition 2022 (Leicester).


Sharing your story helps drive positive change for people affected by neurological conditions. We like to share the experiences of real people who are using, fundraising or volunteering for our services to help raise awareness of neurological conditions.

There are many ways to share your story with us – in written format, as a video recording or an audio recording, we even have people share their story through artwork. It’s up to you which you most feel comfortable with.

To share your story, get in touch with us. We’d love to hear from you.