Two Australian women have revealed the reality of living with eczema, saying treating the painful skin condition is not only expensive but impacts every aspect of their lives.
Jess Peters, 30, from Tasmania, and Alana Green, 21, from Sydney spoke to FEMAIL about the condition, which is causing them so much pain that simple tasks like showering seem impossible.
“Well intentioned, people never understand that — they say it’s just a rash, but it’s so much more than that,” revealed Jess, who suffers severe flare-ups when she’s stressed.
Jess Peters pictured suffers from a painful flare-up of her eczema at times of stress – she is currently 14 months with a flare-up that started when she was having a baby
Jess, left, suffers from flare-ups triggered by periods of stress. Alana, yes, had eczema all her life, but it got a lot worse when she hit puberty
Alana, pictured with her boyfriend, says she’s still wary of wearing shorts in public because of her skin and the constant questions and opinions fired at her
Alana, who suffers from chronic eczema rather than flare-ups, added: “And then they’ll ask if you’ve tried moisturizer or steroids. Of course I have, but there is no one treatment that works for everyone.”
Her decision to speak up about her experience with the condition coincides with Eczema Awareness Week, and new data shows sufferers spend an average of $280,000 over their lifetime to relieve the itch.
Jess has suffered from flare-ups since she was six – with the worst of them coinciding with stressful times in her life.
The first major episode began when she was 17, lasted two years, and ended with hospital treatment.
She was 25 during the second major flare-up, which began when she was a full-time firefighter, working night shifts.
Jess eventually quit the job and moved to Townsville from Tasmania to try to get the painful condition under control.
The last outbreak started 14 months ago when she had her first child.
Jess decided to quit her dream job with the Tasmanian Fire Service because night work and the stress were causing her skin to flare up – which meant her husband, as pictured, had to go back into the army to make ends meet
Jess has to wrap her arms and legs in cold, wet bandages and cover herself in a special concoction of moisturizer, steroid cream, and topical antibiotics to see any improvement
The flare-ups are taking a toll on Jess’ mental health and when it’s at its worst, she feels suicidal because she can’t see the end of the pain and itching
“The lack of sleep and the stress that comes with being a new parent triggered my eczema again,” she said.
“I’ve spent the last few years trying to avoid stress to keep it under control. I can deal with the little spots, but once it spreads it changes everything.”
Jess took a $30,000 pay cut when she left her job as a firefighter, and has since worked menial jobs because she fears anything challenging will upset her.
“I’ve tried everything, I’m now on a skin cream that seems to work, but doctors don’t like it very much because they use steroid cream and antibiotic cream for longer than they’re normally comfortable with.
“But they said this was my last step before I tried immunotherapy drugs, which are really scary and poison the body – similar to chemotherapy,” she said.
Jess began taking antidepressants as a teenager after her battle with her skin began to affect her mental health.
Alana explained that her eczema is often so painful that she can hardly bear to shower
“It sounds ridiculous, but on top of everything else you worry about how you look. I didn’t want to wear shorts and got body dysmorphia because of my eczema,” she said.
“I was traumatized by it.”
Jess is only comfortable in bamboo clothing and cannot engage in water sports or any exercise that makes her sweat too much because it causes her skin to deteriorate.
“Even a shower stings, and I have to plan everything in my day around the eczema when it’s bad,” she said.
It can take her an hour to apply all the creams and wrap her body in wet bandages — one of the few treatments she finds relieves the pain.
Alana once said that she would wake up every morning to see that the painful condition had spread even further
She has noticed a huge improvement in her condition since qualifying for Dupixent injections
And Alana understands that — she often finds that she changes up her day, including her exercise schedule, based on how sore her skin is.
But unlike Jess, Alana has persistently inflamed skin that itches and burns on multiple levels.
“It was the worst during my senior years at school. I woke up and saw that another inch of my body was covered until one day it was basically head to toe,” she said.
Alana said she went to dozens of doctors, skin specialists and naturopaths to try and stop the pain.
“First they said it was allergies, but then all the tests came back negative. That was disappointing because it would be easy to cut something out of my diet,” she said.
The 21-year-old said she’s tried each cream in countless combinations and often spends $50 a week on moisturizers alone.
Six months ago, Alana finally managed to get her skin under control after demanding to try Dupixent, an injection that helps with eczema.
What is eczema?
Eczema is a broad term used by healthcare professionals to describe a general group of conditions that can cause the skin to become red, dry, itchy, and scaly, and in severe cases it can ooze, bleed, and crust, leaving the sufferer much discomfort. Sometimes the skin can become infected.
The condition may also flare up and subside for no apparent reason.
Although eczema affects all age groups, it usually appears in early childhood (in babies between the ages of two and six months) and disappears around the age of six. In fact, more than half of all eczema sufferers show signs within the first 12 months of life, and 20 percent of people develop eczema before the age of five.
Most children grow out of the condition, but a small percentage can suffer from severe eczema into adulthood.
The condition can affect not only the individual affected, but also their family and friends. Adult eczema is often very difficult to treat and can be caused by other factors such as medication.
What causes eczema?
The exact cause of eczema is unknown – it appears to be linked to the following internal and external triggers:
– Family history of eczema, asthma or hay fever (the strongest predictor): If both parents have eczema, there is up to an 80 percent chance that their children will also develop eczema
– Some foods and alcohol: dairy and wheat products, citrus fruits, eggs, nuts, seafood, chemical food additives, preservatives and colorings
Irritants: Tobacco smoke, chemicals, weather (hot and humid or cold and dry), and air conditioning or overheating
Allergens: dust mites, mold, grasses, plant pollen, food, pets and clothing, soaps, shampoos and detergents
What are the symptoms of eczema?
Moderate to severe itchy rash – dry, red, blotchy, or cracked skin.
It usually occurs on the face, hands, neck, inner elbows, back of the knees, and ankles, but can occur on any part of the body.
Skin wets watery liquid
Rough, “leathery,” thick skin
The drug costs her $20 each and she has to have injections every two weeks to keep her skin under control, but Alana says it’s worth it.
Before the drug was added to the PBS in 2021, eczema sufferers who could afford it paid $22,000 a year for the injections to live normal lives.
“Since getting it, I’ve been able to do so much more, feel comfortable in shorts and live a healthier, more active life,” she said.
Prescriptions are issued in semi-annual installments.
“I worry that my body will need it and that I’ll have to take it for the rest of my life, but right now it’s my only real option,” Alana said.
“I took it a day late last time and my skin puffed up a bit – so I definitely can’t afford to miss it, which makes me afraid my doctor won’t prescribe it anymore either.”
The 21-year-old says she’s felt a big change in her mental health since taking control of her skin
Both women said the way they see the world has been distorted by the pain, itching, lack of sleep and shame they experience every day from eczema.
“I do all of my chores today because I feel good — and it’s rare that I don’t have an itch or pain,” Jess said.
“I don’t know how bad it is or how crappy I feel until I have a pain free day and it’s amazing.”
The Eczema Association of Australasia Inc (EAA) is calling on government agencies to provide greater support to those affected and their carers through the National Disability Insurance Scheme (NDIS).