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Spina Bifida Awareness Week 2021 - Mark's Story

17th October 2021


Mark's Story...

"All of this I would never have thought possible in a million years before accidentally stumbling across Shine!"

Like so many born with spina bifida, no matter how minor or severe our symptoms, there is in my eyes a real lack of support / knowledge / understanding from professionals with all our complex medical conditions we must deal with,  in whom to send us to and how to deal with each issue we are faced with. 

Growing up with spina bifida I found extremely challenging. As a youngster I would remember my mum always taking me to central London to see doctors at a children’s hospital on a regular basis.  

Throughout my childhood and adolescent years I would face the issue of being bullied daily for being different to others and instead of being the better person I would become very violent towards anyone and everyone. 

Not only had I been born disabled in body, but I was becoming mentally disabled - it seemed like every day to me was a fight and I couldn’t understand "WHY ME?" 

As I grew up, I had never had any support for not having any control with my bladder, and couldn’t understand if there was a reason why I was always needing to empty my bladder when others never seemed to have the same problems as I did. I would feel very alone with a lack of knowledge and embarrassed with what felt like nobody to turn to regarding all these things I had to try and get my head around. 

It wasn’t until I was 38 years old that I finally got referred to see a urologist regarding my bladder. After so many years I was finally introduced to self-catheterising, which again I never knew about until it was suggested to me to try.  

Although I had been so lucky in my younger years to be able to walk, as each year has gone by, I have found it a tougher strain on my lower body to walk, balance and live as normal a life as I could. 

Up until these last couple of years I had no idea that this amazing charity I had stumbled across called Shine existed. 

At a point in my life where coping was becoming physically and mentally exhausting due to my legs giving way on me quite frequently, foot ulcers resulting from nerve damage which have led to some serious infections of late, bladder....and now major bowel problems after my appendix bursting and leading to peritonitis in 2016, Shine and more than anything my Support and Development Worker, Debi, offered me hope to live a fairly normal life once again. 

I now have a fantastic support network of people I can turn to  nowadays, be it Debi and the amazing Shine Charity, my Healthy Minds Councillor, Podiatry Dept. I see weekly now, my doctors who too have been amazing, the Urology Nurses I have supporting me, Physiotherapists, or Pain Management team. 

Shine supported me with regards to my Workplace Adjustments and Application for PIP, which has enabled me to lease a car and allow me to get from A-B as I am becoming increasingly less mobile. 

Shine have also given me advice on any concerns I may have and are just an email or phone call away. They have also helped with submitting an application for me to apply for a grant towards an electric scooter and home adjustments as and where needed. All of this I would never have thought possible in a million years before accidentally stumbling across Shine! 

If I had known of Shine years ago, I think this absolutely amazing charity would have improved my quality of life no end. 


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