IT has taken five years, but Leah Fawthrop is ready to discuss the "hideous" condition that led to her sister, Marion, taking her life at 49.
"Meniere's disease is not well-known or understood," Ms Fawthrop said.
"It was extremely distressing to watch Marion suffer and retreat from the world."
Meniere's is a disorder of the middle ear that affects hearing and balance and causes vertigo, tinnitus and hearing loss. It is unpredictable and difficult to diagnose and manage.
One in 600 Australians are affected and symptoms become pronounced in those aged between 30 and 55.
Marion endured a barrage of tests over many years before being diagnosed in her 40s. Her symptoms got progressively worse and a severe episode would trigger crippling vertigo and nausea.
"She would be forced to crawl to the bathroom," Ms Fawthrop recalled.
"She wouldn't be able to function, but she was so proud and didn't want to be a burden."
In the end, Marion was unable to go on.
"The psychological impact is as debilitating as the physical symptoms," said Meniere's Australia community development officer Michelina Sinopoli.
"Depression is common because it affects a person's ability to work, as well as their relationships and social life.
"The unpredictability of the condition creates anxiety. 'What if I have an attack while I'm shopping?' People experiencing an episode are often mistaken as being drunk or on drugs."
There is no cure for the disorder, but many sufferers are able to manage the symptoms with medication, dietary and lifestyle changes.
Ms Fawthrop, the president of the Hunter Arts Network, now wants to transform her grief into something positive.
In recognition of her sister and her passion for the arts, she has created the fund-raising initiative, Marion's ARTREE, which she hopes will also increase awareness.
Artists and "crafty" people are invited to create Christmas-inspired decorations and artwork that will be sold throughout December.
Ms Fawthrop will launch one of what she hopes will be many "artrees" at the Summer Art Bazaar in Civic Park on December 7 and is seeking the support of organisations to host a tree.
"I don't want Marion's ARTREE to be about sadness," she said.
"Our family Christmases were big, boisterous gatherings and Marion was always at the centre of them."
To participate in Marion's ARTREE send an email to email@example.com.