What is Dystonia?

Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. The movements and postures may be painful. Dystonic movements are typically patterned and repetitive.

Dystonia can affect any region of the body including the eyelids, face, jaw, neck, vocal cords, torso, limbs, hands, and feet. Depending on the region of the body affected, dystonia may look quite different from person to person.

In addition to causing abnormal movements, depression and anxiety are common non-motor symptoms of dystonia.

Dystonia brain disorder has changed the lives of 70,000 people in the UK but there’s no cure

What is “Warriors of Dystonia”?

Warriors of Dystonia is a book project that I have launched where people with dystonia or anyone who has someone in their lives affected by dystonia can share their personal accounts with me and I will add them to a book.

Anything can be shared – from when someone first noticed dystonia symptoms, diagnosis, daily battles and coping mechanisms, as well as sharing a glimpse into the lives of someone with or caring for somebody with dystonia.

Submissions to this book are open until October 31st 2020 – after this date I will begin the publishing phase.

About Me

Hello, my name is Karl

and I’ve had cervical dystonia since 2007. My head pulls to the left 24/7 and is often accompanied with a tremble too. I will suffer aches from time to time, usually in my shoulder and back of my head as I try to physically stop the unwanted movement. Social situations and anything that makes me stressed or nervous will make the movement more prominent, making me even more nervous and anxious. Balance can be a little off from time to time and I am exhausted from the constant attempts to keep my head straight or at least hide the effects of the dystonia. I do not take any forms of medication for my dystonia. This has been my choice. With all of this in mind, I am not just lucky, I’m very lucky.

Do you or someone you know have dystonia?

I want your stories

All over the world there are dystonia warriors, fighting their own battles that are, more often than not, a hell of a lot more difficult than anything I’m dealing with. I want these stories for the book.

Awareness and Hope

It is my goal that this book gives insight and awareness to those who do not have dystonia and for my fellow dystonia warriors to see that they are not alone and maybe find some solace in those difficult times.

Fund research

It is my intention that all profits from this book go to charities/organisations that are looking for research funding into this neurological condition.

Share your story

To share your story with me to go into the book and to find out more please click the blue button below.

And please share this site with anyone you know who’s life is affected by dystonia who may wish to be part of this project too.

Project Updates

For the most recent updates on how the project is progressing and what is planned next, please click the button below.