Jane Yates (53), of Back Street, Alkborough, has Arnold Chiara Malformation (ACM) - a disease which can cause a host of health problems, including pain, disability, paralysis and, in some circumstances, death.

Jane, a talented painter who used to teach art full-time at North Lindsey College, said: "My illness is when the base of the brain drops down into the neck.

"There is no cure; all they can do is try to stop it getting worse.

"Scientists do not yet fully understand how the brain works, so they are working in the dark."

Jane is helping to host a big `slave auction` event tonight to raise cash for Talking News, a charity which provides free audio versions of the Scunthorpe Telegraph for the blind and visually-impaired, and the Ann Conroy Trust, which provides care for sufferers of her disease.

Jane was diagnosed in 1995 and had an operation at Birmingham University Hospital.

The surgery was done in time to stop advancement into a condition called Syringomelia, but was too late to prevent nerve damage.

She then had a second op in 2005, where surgeons implanted a shunt in the base of her spine to drain away the build-up of cerebrospinal fluid.

"Everything in my life has suffered because I have to rest so much," she said.

Side effects of the nerve damage cause her sight and balance problems, which get worse when she moves around.

Jane was in her 40s when the disease was diagnosed, but feels she has been partly lucky not to have developed some of the symptoms sufferers can get.

These can include paralysis, extreme headaches and can be similar to Multiple Sclerosis, which she thought she had for several years.

"GPs don`t tend to know a lot about it so some people are left for years and don`t get any help," she said.

Jane wants to raise the profile of the disease by raising cash.

"The symptoms are different for everyone," she said.

"The charity is really pleased just to get any amount of money so it will be nice to be able to give something back to them and make a contribution to helping others."

Find out more:

www.theannconroytrust.org.uk

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