Every night before bed, Rheanca would pray that she could have white skin.
Maybe then she'd get a diagnosis.
"It was really difficult to get doctors to realise the severity of my eczema because it presents differently in brown skin," she says.
"The feeling of being invalidated was really strong when I was younger — it felt like doctors thought I was just making a big deal out of it and that I wasn't actually suffering."
Far from merely a rash or an itch, atopic dermatitis is a chronic and complex itchy skin condition that can have profound impacts on quality of life.
Rheanca, whose condition is severe and medication-resistant, likens it to having "a lot of little paper cuts on your arms and legs".
Moving around can cause the wounds to "open up", making simple tasks like getting out of bed or taking a shower extremely difficult.
But despite the at-times "overwhelming" pain, when the 16-year-old would go to the doctors for help, she found herself met with a similar response: "You look fine."
"One of the markers of severity in atopic dermatitis is the degree of redness, but it looks different on my skin," she says.
The prevalence of eczema could be higher than thought
An estimated 1.6 million people across the country live with eczema, but those numbers don't tell the full story.
Australia doesn't have a national disease registry that collects diagnoses of the condition, which can make it "really difficult" to determine the actual prevalence, says Melanie Funk, head of Eczema Support Australia.
"But what we do know from the most recent study is that it is potentially much higher than we had previously thought," she says, pointing to a soon-to-be-released white paper by the organisation.
"It could be more like 2.8 million Australians with eczema — this latest data is indicating that, particularly in eastern Australia, the numbers are very high."
The report, which will be released in April, is a review of studies from 265 publications.
The higher prevalence figures are based on research published in the Australasian Journal of Dermatology in February this year, which analysed data collected on eczema from four Australian studies.
Through this, Eczema Support Australia was able to determine the average prevalence rates among different age groups and extrapolate them using June 2022 figures from the Australian Bureau of Statistics.
Above all, what the figures show, Ms Funk says, is that "many people are not getting the support and treatment they so desperately need".
For those with darker skin types, these diagnostic challenges can be even more pronounced.
Australian data is limited, but population studies in the US have shown that while eczema disproportionately affects African Americans, some doctors may underdiagnose the severity of the condition in people of colour due to difficulties identifying it.
Dr Ranindu Abegunawardene, who has lived with severe eczema since childhood, says misconceptions around how inflammation in the skin presents in different people can lead to delays in receiving diagnosis and treatment.
"I remember creating a presentation recently for medical students and I did a google of eczema, and the top results all describe [it] as itchy red rash," he says.
"Similarly on Google Images, when I was looking for some pictures to put in the slides, the majority, I would say 90 per cent of the images, were of a red rash on lighter skin types."
In the regional Queensland community of Toowoomba, it was a story playing out for Rheanca.
Growing up, she found doctors were either unwilling or unable to recognise she had eczema, because it presented "more like a purply-brownish colour" on her skin.
"I think sometimes people think of eczema as a little rash that you get occasionally," she says.
"But when it's severe, it's just so detrimental to your mental health and your physical health. It can be really devastating."
Eczema can take a physical and mental toll
Studies have shown adults with atopic dermatitis are up to three times as likely to have depression, while there is evidence of an increased prevalence of depression and anxiety in children severely affected by the condition.
"Part of that reason is severe sleep deprivation, for both families with a young child with eczema and individuals themselves with eczema," Ms Funk says.
"Then there's also the social isolation from living with a chronic illness that impacts everything you do in life, that's going to have a huge mental health impact as well."
Rheanca remembers the sleepless nights, and being unable to play dress-ups or go swimming with her friends when she was a kid.
It was an at-times frustrating experience, she says: people didn't always "realise the extent to which it did impact" her life.
According to Eczema Support Australia''s white paper, about 20 per cent of children under 14 experience the condition.
For those aged 15 to 24, that figure is "around 15 per cent", Ms Funk says.
"It's really important for teenagers to know that there are other people that really truly understand what they're going through on a day-to-day basis," she says.
"Teenagers in particular have had very little opportunity to really connect with their own peers that understand what they're going through."
Young people with eczema 'are not alone'
After her own experience trying to navigate the health system and a wider lack of understanding around the condition, Rheanca decided to start a support group for teenagers living with eczema.
itchY – founded by Rheanca then supported by Eczema Support Australia and Dr Abegunawardene — provides a safe and confidential online platform for teenagers to share and connect.
"We've had people say how meaningful it was to them, they didn't realise there were so many young people out there just like them," Rheanca says.
"That was a really powerful realisation, to know that we're not alone."
Through a closed Facebook group, they share tailored information, host online support meetings featuring healthcare providers, and promote access to ESA’s free professional psychological support program.
Dr Abegunawardene is acutely aware of the gap itchY is filling. During his teenage years, the condition took a significant toll on his self-esteem and relationships.
"I remember our first meeting late last year, hearing their stories was both really pleasing to see that they felt comfortable sharing their experiences, but also quite saddening and relatable for me," Dr Abegunawardene says.
"Hearing some of the teens describe how isolated they felt, how helpless they felt, it reinforced for me that it's important to provide a safe place for people to come together and talk about how they've been feeling and for us to support them through this eczema journey."
The need for education and support
While there's no cure for eczema, those with lived experience believe more awareness will help create a better understanding of the condition and the supports available.
According to Dr Abegunawardene, that starts not only with the health sector, but the community more broadly.
"Australia being this wonderfully diverse multicultural community, it's imperative that we break down barriers and misconceptions around how eczema can appear in all different skin types," he says.
"Eczema really doesn't discriminate, it can affect anyone of any age, any background, any gender, any skin complexion, and it is the most common chronic skin condition in the world."
Reflecting on her experience, Rheanca is candid: "I want people to have compassion", she says.
"People didn't see my eczema, they couldn't see the extent that it was affecting my life.
"You don't always know what people are going through."
The ABC's Heywire competition is open to all regional Australians aged between 16 and 22.
The annual competition provides a platform for the younger generation, in pockets of Australia that rarely see the spotlight, to "tell it like it is".
If you are aged between 16 and 22 and would like to find out more about the ABC Heywire Competition, go to the ABC Heywire website.
