Kath put it down to being tired and stressed. She had been recovering from three bouts of bronchitis within a period of a couple of months.

A mid-morning coffee seemed like a solution to Kath, who was wobbly - but not faint - on her feet when walking to the office tea point. A colleague had to help her up when she tumbled.

By the next morning, Kath could not get out of bed by herself.

This was the start to Kath learning about a rare disease that changed her life forever and took her to a lonely, isolated place. Craving a chance to speak with others of similar experience, Kath helped create a support group on social media about six years ago which now boasts more than 4000 people with related neurological conditions.

Kath had Guillain-Barre Syndrome, a condition she likened to multiple sclerosis for the way it attacks the coating along the nervous system. The result Kath likened to messages from the brain "taking the scenic route" - she knows what she wants to do, like take a step forward, but it takes time to figure out.

Most people can recover but with a high chance of lingering or recurring symptoms.

For Kath, it took finding the right doctors to figure it out.

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A nearby doctor in Deer Park, where she was living at the time, suggested it could be a mild stroke or a rare disease of which Kath had never heard. So she assumed it was a stroke, because she could relate to that.

After two hospital visits, the second was on referral to St Vincent's, "a lovely Israeli neurosurgeon" came in with a group of medical students and knew what was wrong. This neurosurgeon had seen the condition before.

Kath was placed in intensive care for six days for a loading of intravenous immune globulins and a plasma exchange to halt disease progression.

This helped, but there are still some days worse than others for Kath, particularly if she tries to do too much in one day.

"I did find a support group but it was not the best experience. There were no information pamphlets or support people I could speak with. I was just told to come to the next meeting," Kath said.

"I felt all alone. I muddled along for about six months before starting my own support group. It's good because the disease is not well-known here in Australia. Basically it has become an (American) populated group but I've found people in Australia have broken off and started their own support groups in their own areas. It's nice to let them know they're not alone."

Kath and her husband moved to Ballarat two years ago for a lifestyle change. Her general practitioner in Ballarat has been keenly learning all about GBS with Kath both to support her and to help increase awareness for the condition in the region's medical community.

The hard part is GBS varies depending on how soon it is identified for treatment and the degree to which symptoms hit.

Kath is flying to Syndey for a conference with the international foundation supporting patients, advocating and funding research for the disease. The foundation is predominantly based in the United States. This will mean Kath will have access to leading neurologists from the US and the latest on treatment and research to share in Ballarat and via her online support network.

The conference coincides with World Rare Disease Day on February 29.

For those with a rare disease seeking support, contact Kath via facebook.com/groups/gbscidpexercisers.

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