Liam shares his dystonia story.

Before dystonia I was happy and healthy. However in 2016, I lost the ability to walk and talk. My cognitive skills deteriorated, I became incontinent and non-verbal. My mind was just blank, and I didn’t know what was happening around me.

I struggle to remember my time in hospital, but what I can remember is faces and bright lights. At first doctors were baffled by my mystery illness, I was even filmed for medical research for universities around the world. I had so many scans, tests and assessments but everything came back normal. I was also seen by a specialist team from Great Ormond Street. I spent many months in hospital and was eventually diagnosed with FND (Functional Neurological Disorder). A few weeks after being discharged from hospital, at age 13, my neurologist and paediatrician diagnosed me with dystonia.

I suffered from dystonic posture and muscle contractions. My head was on my knees, I couldn’t sit up and my whole body became stiff. I was offered a specialist wheelchair, but this didn’t last long due to my deteriorating posture. My hands were clenched and feet were turned inwards, I couldn’t tolerate shoes. My body was unable to tolerate physio. Unfortunately, things then took a turn for the worse and I became bedridden - the only place I felt comfortable was my hospital bed. I was bedridden for three years and I felt so uncomfortable all the time. 

“At my worst, having dystonia was like being awake in a body that had stopped working. It’s been a long, hard battle relearning how to do things my body used to take for granted.”

When I was bedridden, I needed 24-hour care and I couldn’t do anything for myself. I was given splints for my hands and feet but couldn’t tolerate them either - I felt trapped inside my own body. It was painful and very isolating.

There’s been times my dystonia symptoms weren’t understood due to lack of understanding which is why raising awareness about dystonia is so important. Eventually after three long years my dystonia started to improve. I slowly learned how to sit up again and my body didn’t feel so stiff anymore. When I was no longer bedridden, I had a few hydrotherapy sessions which helped me to relax.

When I was poorly, I formed a special bond with London and the ITV show Loose Women. It was my dream to visit London and to meet the Loose Women, but due to my illness I wasn’t well enough to go.

When I was well enough, I went to London and have been back many times since. It’s my favourite place and is part of my rehabilitation. The Loose Women heard about my story and sent me a video message, then a few months later I met some of them in person at the show. I’ve now met 15 Loose Women!

Dystonia was life changing for me but I’m now slowly starting to recover and learning to walk again. I was unable to walk for five years but I’m now able to stand again and walk with support which is a huge achievement for me. To this day I still have dystonia but it’s nowhere near as bad as it was.

“Despite my dystonia I’ve never given up hope on achieving my dreams. The impact of having severe dystonia is still felt in my body, but I’m now more determined than ever to not let my dystonia hold me back from doing anything.”