A BRAVE campaigner who has battled and raised awareness of a potentially fatal neurological disorder is off to Buckingham Palace to have tea.

Lorraine Jackson, from Cowley, will be at the palace on Thursday to mingle with several thousand people invited to one of the Queen’s garden parties.

Since becoming chairwoman of the Dystonia Society Oxford Group in 2008 she has organised several meetings for sufferers around the country and done much to raise the profile of the condition.

She became chairwoman of the group “by accident” when attending a meeting which she hadn’t realised was the group’s annual general meeting.

The former chairman stepped down and Ms Jackson put herself up, thinking it would just be for a year.

Five years on, she has received a garden party invitation from Princess Alexandra, who is a patron of the charity, in recognition of her efforts. Ms Jackson said she was “gobsmacked” to be asked. The 49-year-old said:“I’ve been so busy with getting on with the job I didn’t think I’d made such an impression.

“On reflection, I have achieved quite a lot in a short time but am very aware we still have a long way to go.

“I shall certainly use the event to raise our profile and keep the public informed of the help and support needed both locally and nationally.

“I hope it’s a nice day.

“My daughter is so proud and has been telling everyone, but I’m just letting it sink in.”

Her daughter, Davina Quarterman, is a web publishing manager for Wiley Blackwell which has generated support and interest about the neurological disorder.

Some dystonia sufferers have taken their own life because of the constant pain they suffer.

Ms Jackson suffers from paroxysmal dystonia, a form of generalised dystonia in which both legs and other parts of the body are affected.

But after her diagnosis five years ago the former schoolteacher vowed not only to live her life to the full but also spend every spare moment raising awareness.

Ms Jackson, a part-time writer who produces Cowley News and spends much of her time helping with the Barracks Lane Community Garden, said:“It’s the most frightening thing to experience it in a place you’re unfamiliar with or if you’re surrounded by people who don’t know what’s happening. Initially it looks like a stroke because your muscles literally work against you.

“My tongue goes stiff and my jaw suddenly twists and locks. “Then my fingers and toes will claw and pretty much after that I’m on the floor or wherever I fall until the seizure subsides.”

For more information about the condition, see dystonia.org.uk

THE CONDITION

Dystonia is a medical term that describes a range of movement disorders that causes involuntary spasms and contractions.

There is no known cure.

The two most commonly affected areas are the neck muscles and the eyelids. Dystonia can affect one muscle or a group of muscles.

There are five types in total – focal, which affects a single body part such as the hand or eyes; segmental which affects the neck and shoulders; multifocal, which affects two or more body parts which aren’t connected, such as left arm and left leg; generalised, which affects both legs and other body parts, and heidystonia, that affects half of the entire body.