A woman suffering from a rare condition which causes her head to rotate to the left has pleaded for something to be done to raise awareness.

Jackie Sloper from Bevendean said even nurses and doctors were unaware of the effects of dystonia, the incurable neurological muscle disorder from which she suffers.

On one occasion at hospital she was ordered by a nurse to hold her head up straight even after explaining she could not because of the condition.

Mrs Sloper, 66, said: "People don't understand it because they don't know about it, even at the hospital they treat you like you are stupid. It's embarrassing."

The condition is genetically transferred and can develop at any stage in life. It is similar to Parkinson's disease.

Mrs Sloper's dystonia has developed over the past five years and now prevents her from reading or writing, driving and from taking part in many activities she has been able to enjoy throughout her life.

Her right arm constantly shakes as a result of the condition as does her head and neck. The muscles in her neck pull her head to the left but do not support it, so her chin droops.

Mrs Sloper has to have botox injections in her neck once every three months to strengthen the muscles so that she can hold her head up.

As the botox gradually wears out after each injection her head begins to droop again. She would like to be able to have the treatment more regularly but has been told injecting too much botox can have a detrimental affect.

Dystonia, a condition endured by 40,000 people in the UK, set in gradually for Mrs Sloper.

She said: "The first thing I noticed was one day when I was watching television I found that my head kept turning and I would find myself facing the wall. At first I thought I was imagining it but I soon realised something was wrong.

"From there it gradually spread to my arm and head.

"It is an awful condition, it causes me a great amount of pain. Sometimes I will wake up in the night with pain throughout my body, it is dreadful.

"It is very frustrating for me as well. I have been healthy throughout my life but now I can no longer do a lot of things.

"People treat me differently, they see my head shaking or drooping and look at me in a different way. It can be quite unpleasant."

Mrs Sloper said she was determined to raise awareness of the condition, particularly among the medical profession. She has already offered to visit the medical school run by Brighton and Sussex Universities to give students a chance to see how the condition affects people.

National Dystonia Week runs next week from Sunday, May 6, to Sunday, May 13. For further information visit www.dystonia.org.uk.

Have you or anyone in your family been affected by dystonia? Leave your comments below.