LYN Cleaver still remembers being told she had opened her 6-year-old son to the devil.

It was almost two decade ago and her son Jeremy Bester, now 24, had just been diagnosed with refractory epilepsy.

Back then, it was seen as "taboo" to have epilepsy and in many parts of the world it still is.

Ms Cleaver and partner Malcolm Amundsen, of Launceston, believes the epilepsy stigma in Tasmania is improving, but there is much more that could be done around education and awareness.

Some 5200 Tasmanians live with some kind of epilepsy, with 70 per cent of people leading normal lives.

Mr Bester's epilepsy is more severe. He can't talk, has severe epileptic seizures and is unresponsive to medications.

Ms Cleaver said Mr Bester was initially diagnosed with suspected acute encephalitis.

"He started to have what we now know as partial seizure, we thought he was hallucinating," Ms Cleaver said.

"He started seizing and didn't stop. It was a basic illness that made him unwell, it crossed the brain barrier and cause the encephalitis."

He spent 40 days in hospital, was put in a drug-induced coma and flown back and forth to the mainland.

"We had a younger son who was not quite two and we had to leave him in the care of my parents and travel to Melbourne with Jeremy," Ms Cleaver said.

"Jeremy, because of his brain injury with the encephalitis, was quite violent for a number of years. It was incredible tough."

Ms Cleaver said they had tried every suitable pharmaceutical medication and surgery, but nothing had stopped his seizures.

Both Ms Cleaver and Mr Amundsen are keen advocates for medicinal cannabis and believe it could help many others like their son.

"Up until we started the cannabis therapy with Jeremy he was very unstable with his seizure activity and his behaviour," Ms Cleaver said.

Mr Amundsen said it changed Mr Bester's life. "It's the only medication that's worked (without side-effects)," he said.

"He wouldn't be here today if it wasn't for cannabis, he'd be seized and on the couch for three or four hours."

Ms Cleaver said because Mr Bester's condition was so debilitating it was good they had the support of Epilepsy Tasmania. Epilepsy Tasmania officially opened its new Launceston office on Friday.

The office is located at 30 Brisbane Street and is open for anyone to stop in.

Epilepsy Tasmania executive officer Phil Baker said more and more Tasmanians were being diagnosed with epilepsy, especially the elderly, due to people living longer and higher risk factors for falls.

The organisation is trying to form support groups in both Launceston and on the North-West for people living with epilepsy.

It hopes to have them up and running in May.

Purple Day, Supporting Epilepsy Around the World will be held on Thursday, March 26.

Twitter: @ManikaDadson

Email: mdadson@fairfaxmedia.com.au