Jessica Elwell was in her late teens when the skin condition eczema began to wreak havoc on her life.
"I ended up being hospitalised for a week and having to have wet dressings, steroids, and moisturiser applied three times a day by the nurses which got my skin under control," she said.
Her second serious flare-up came several years later when she was working long overnight shifts as an emergency dispatcher for the Tasmania Fire Service.
"That's when my eczema just took off and just spread all over my body, including onto my face," Ms Elwell said.
For the next 18 months, Ms Elwell "tried everything" to bring the condition under control, including steroids, creams and UV treatments.
"When I was really, really bad, [my husband] would have to wash my hair over the bath, covering me in creams, wet wrapping me," she said.
The couple made the last-resort decision to relocate from Hobart to Townsville in North Queensland, where the humid climate would provide some relief to Ms Elwell's skin.
"It was heartbreaking to have to give up not only the job, but both of our families [in Tasmania]," she said.
Within four months, she said the eczema "had almost completely gone".
Eczema's hidden toll
Eczema, which is characterised by dry, itchy, scaly patches of skin, affects 20-30 per cent of children and about one in 10 adults.
Deshan Sebaratnam, a fellow of the Australasian College of Dermatologists, said most patients suffered mild to moderate symptoms, but a minority experienced severe eczema head-to-toe.
"Because eczema is so common it's often considered a trivial condition … but eczema can be deadly because you're at increased risk of other infections," Dr Sebaratnam said.
While most eczema medications are listed on the Pharmaceutical Benefits Scheme, the Eczema Association of Australasia (EAA) said many people fork out significant amounts of money on extra skin care measures and specialist visits.
"It can be up to $7,000 a year just for your over-the-counter and prescribed products," EAA president Cheryl Talent said.
"People with eczema, they may need to use a specialised topical cream three, four, five, six times a day. So you can imagine the amount that you're going through."
The advocacy group is fighting to raise awareness about the real cost of eczema and is calling for more support for sufferers and their carers through the National Disability Insurance Scheme (NDIS).
"We'd like to have a look at NDIS funding and see if there's some wiggle room there … just to help these people with eczema manage the costs a bit better."
Dermatologist shortage
Ms Talent said patients could be left waiting almost a year to see a specialist.
"Waiting lists to see a public dermatologist are absolutely beyond a joke," she said.
Dr Sebaratnam said the dermatologist shortage was an international problem.
"We need more hospitals to employ dermatology training positions so we can get more medical specialists out there, and also upskill GPs," he said.
"There are lots of myths about skin – it's one of the things taught quite poorly internationally in medical schools – and with [eczema] affecting one in five Australian kids I think increased education would also be a helpful intervention."
Not 'just a rash'
After two years in Townsville, Ms Elwell returned to Hobart to be closer to family.
Her eczema returned following the birth of her son.
"Pretty much as soon as he was born it just again slowly started to spread, so I was completely covered again," she said.
Her son also has mild eczema, and she hopes he never has to experience how debilitating the condition can be.
"I've had people say to me, including family, that 'it's just a rash', not realising how it affected me not only physically but mentally," she said.
Ms Elwell has just embarked on a new course of treatment which is showing promising signs but costs $200 a month.
"So it's really expensive, especially with the cost of living these days," she said.
