Multiple System Atrophy (or MSA) is a neurological brain condition caused by the gradual loss of nerve cells and the shrinkage of brain cells that control movement.

The 59-year-old Windale resident was only recently diagnosed with MSA after her symptoms were wrongly attributed to Parkinson's disease.

"It's difficult to diagnose, and often people are misdiagnosed before the doctors can figure out what's going on," she said.

"It's not uncommon for a GP or a specialist not to see MSA in their lifetime."

In 2007, Mrs Chester started to experience parasomnia, coupled with stiffness in the neck and lower back.

She then started to feel unsteady on her feet, her speech became slurred and she lost control of her bladder.

Mrs Chester now also has trouble swallowing, as well as completing everyday tasks such as writing, pushing a shopping trolley and brushing her hair.

"MSA takes away your independence and you start to rely on family and friends to do everything for you," she said.

"I feel so isolated, because no one else I know has it," she said.

An estimated 1000 Australians are living with the disease, but the exact number is not known, with no national register or dedicated support groups.

Mrs Chester used Facebook to find someone else who has the disease.

She tracked down Linda Williams on the Central Coast, who has been caring for a sister who has MSA.

Although the pair have never met, Facebook and telephone chats have helped Mrs Chester understand her condition.

Ms Williams said there were other people in similar circumstances to Mrs Chester, and a national campaign was needed to make both the public and doctors aware of the disease.

Next Thursday, October 3, is World Multiple System Atrophy Day.

Ms Williams said she hoped to connect more Central Coast, Newcastle and Hunter residents with MSA in the coming months so they could help one another.

■ Linda Williams can be contacted by email on dijon4eva@gmail.com, or phone on 4344 1800.