Hidden toll of eczema leaves patients in excruciating pain and thousands of dollars out of pocket

Jessica Elwell was in her late teens when skin eczema started to take its toll on her life.

“I ended up being hospitalized for a week and had to have wet dressings, steroids and moisturizer applied three times a day by the nurses which gave me control over my skin,” a- she declared.

Her second serious flare-up came several years later, when she worked long night hours as an emergency dispatcher for the Tasmanian Fire Service.

“That’s when my eczema just peeled off and spread all over my body, including my face,” Ms Elwell said.

Over the next 18 months, Ms Elwell “tried everything” to bring the disease under control, including steroids, creams and UV treatments.

A woman's back and arms covered in eczema
Jessica Elwell suffered from three severe outbreaks of eczema which at times left her unable to sleep and shower.(Provided: Jessica Elwell)

“When I was really, really bad, [my husband] should wash my hair over the bath, cover me in creams, wrap me in wetness,” she said.

The couple made the last resort decision to move from Hobart to Townsville in North Queensland, where the humid climate would bring some relief to Ms Elwell’s skin.

“It was heartbreaking to have to give up not just work, but both of our families. [in Tasmania],” she says.

Within four months, she said the eczema was “almost completely gone”.

The hidden toll of eczema

Eczema, which is characterized by dry, itchy, scaly patches of skin, affects 20-30% of children and about one in 10 adults.

Dr Deshan Sebaratnam, a member of the Australasian College of Dermatologists, said most patients had mild to moderate symptoms, but a minority had severe head-to-toe eczema.

“Because eczema is so common, it’s often thought of as a trivial condition…but eczema can be deadly because you’re at increased risk of other infections,” Dr. Sebaratnam said.

A baby with eczema on his back
Eczema is a chronic disease that affects the skin, causing redness, dryness, itching and sometimes infection. (Provided: Eczema Association of Australasia)

While most eczema medications are listed in the Pharmaceutical Benefits Scheme, the Eczema Association of Australasia (EAA) said many people shell out large sums for additional skin care measures and visits to specialists.

“It can cost up to $7,000 a year just for your over-the-counter and prescription products,” said EAA President Cheryl Talent.

“People with eczema may need to use a specialist topical cream three, four, five, six times a day. So you can imagine how much you go through.”

A photo of Cheryl Talent, President of the Eczema Association of Australasia
Cheryl Talent says wait times at dermatologists are “beyond a joke.” (Provided)

The advocacy group is fighting to raise awareness of the true cost of eczema and calling for more support for sufferers and their carers through the National Disability Insurance Scheme (NDIS).

“We would like to take a look at the NDIS funding and see if there is some wiggle room there…just to help these people with eczema manage costs better.”

Shortage of dermatologists

Ms Talent said patients could wait nearly a year to see a specialist.

“Waiting lists to see a public dermatologist are absolutely beyond a joke,” she said.

A man wearing magnifying glasses inspects a woman's arm with a light
Dermatologist Dr Deshan Sebaratnam says eczema is often unfairly perceived as a “mundane disease”. (Provided: Deshan Sebaratnam)

Dr Sebaratnam said the shortage of dermatologists is an international problem.

“We need more hospitals to employ dermatology training positions so that we can recruit more medical specialists, and also improve the skills of general practitioners,” he said.

“There are a lot of myths about the skin – it’s one of the things that’s pretty badly taught internationally in medical schools – and with [eczema] affecting one in five Australian children, 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 her family.

Her eczema returned after the birth of her son.

A woman's legs and arm wrapped in bandages
Jessica Elwell’s eczema has taken physical and mental toll. (Provided: Jessica Elwell)

“About as soon as it was born it slowly started to spread again, so I was completely covered again,” she said.

Her son also suffers from mild eczema and she hopes he never has to experience how debilitating this condition can be.

“I’ve had people tell me, including my family members, ‘it’s just a rash’, not realizing how much it was affecting me not only physically but mentally,” a- she declared.

Ms Elwell has just embarked on a new treatment that is showing promising signs but costs $200 a month.

“So it’s very expensive, especially with the cost of living these days,” she said.

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