Two Australian women have revealed the reality of living with eczema and say the painful skin condition is not only expensive to treat but impacts every aspect of their lives.
‘Well meaning people never understand – they say it is just a rash, but it is so much more than that,’ Jess, who experiences severe flare-ups when she’s stressed, revealed.
Jess Peters, pictured, suffers from painful flareup of her eczema during stressful periods – she is currently 14-months into a flareup which started when she had a baby
Jess, left, suffers from flare ups which are triggered by stressful periods. Alana, right, has had eczema her whole life but it became much worse when she hit puberty
Alana, pictured with boyfriend, says she is still anxious to wear shorts in public because of her skin and the constant questions and opinions fired at her
Alana, who has chronic eczema, rather than flareups, added: ‘And then they will ask if you have tried moisturiser, or steroids. Of course I have, but there is no treatment that works for everyone.’
Their decision to speak-up about their experiences with the condition coincides with eczema awareness week and new data showing sufferers spend an average of $280,000 over a lifetime trying to take the itch away.
Jess has been suffering from flare ups since she was six years old – with the worst of them coinciding with stressful periods in her life.
The first major episode started when she was 17, lasted two years and ended with her being treated in hospital.
She was 25 during the second major flare-up which started when she went full-time as a firefighter and worked night shifts.
Jess ended up leaving the job and moving from Tasmania to Townsville to try to get the painful condition under control.
The most recent flare-up started 14 months ago when she had her first child.
Jess decided to quit her dream job with Tasmanian firefighters because night work and stress make her skin flare up – this meant her husband, pictured, had to head back to the army to help make ends meet
Jess has to wrap her arms and legs in cold, wet bandages and cover herself with a special mixture of moisturiser, steroid cream and topical antibiotics to see an improvement
The flareups have a negative impact on Jess’ mental health and when it is at its worst she feels suicidal because she can’t see an end to the pain and itchiness
‘The lack of sleep and stress associated with being a new parent triggered my eczema again,’ she said.
‘I have spent the last few years avoiding anything stressful to try to keep it under control. The small spots I can handle but once it spreads it changes everything.’
Jess took a $30,000 pay-cut when she left her firefighting job and has been in low-level jobs ever since because she is afraid anything demanding will set her skin off.
‘I have tried everything, I am now on a skin cream regime which appears to be working, but doctors don’t like it very much because it involves using steroid cream and antibiotic cream for longer than they are typically comfortable with.
‘But they said this is my last step before trying immunotherapy drugs, which are really scary and poison the body – similar to chemo,’ she said.
Jess started taking anti-depressants as a teenager after her struggle with her skin started impacting her mental health.
Alana explained her eczema is often so painful she can barely stand to shower
‘It sounds ridiculous but you worry about what you look like on top of everything else, I didn’t want to wear shorts and ended up getting body dysmorphia because of my eczema,’ she said.
‘I was traumatised by it.’
Jess only feels comfortable in bamboo clothes, and can’t get involved in water sports or exercise that leads her to sweat too much because it makes her skin worse.
‘Even having a shower stings, and I have to plan everything in my day around the eczema when it is bad,’ she said.
It can take her an hour to put on all the creams and wrap her body in wet bandages – one of the few treatments she finds takes the pain away.
Alana said at one point she would wake up every morning to see the painful condition had spread even further
She has noticed a huge improvement in her condition since qualifying for Dupixent injections
And Alana can relate – she often finds herself changing her day including her workout schedule based on how sore her skin is.
But unlike Jess, Alana has inflamed skin all of the time which itches and burns at varying levels.
‘It was at its worst during my senior years of school, I would wake up and see another centimetre 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 to stop the pain.
‘First they said it was allergies but then all of the tests came back negative. This was disappointing because just being able to cut something out of my diet would be easy,’ she said.
The 21-year-old said she tried every cream in countless combinations and would often spend $50 per week on moisturisers alone.
Six months ago Alana finally managed to get her skin under control after demanding to try Dupixent, an injection which helps with eczema.
What is eczema?
Eczema is a broad term that healthcare professionals use to describe a general group of conditions that may cause skin to become red, dry, itchy and scaly, and in severe cases, may weep, bleed and crust over, causing the sufferer much discomfort. Sometimes the skin may become infected.
The condition can also flare and subside for no apparent reason.
Although eczema affects all ages, it usually appears in early childhood (in babies between two-to-six months of age) and disappears around six years of age. In fact, more than half of all eczema sufferers show signs within their first 12 months of life and 20 per cent of people develop eczema before the age of five.
Most children grow out of the condition, but a small percentage may experience severe eczema into adulthood.
The condition can not only affect the individual sufferer, but also their family and friends. Adult onset eczema is often very difficult to treat and may be caused by other factors such as medications.
What causes eczema?
The exact cause of eczema is unknown – it appears to be linked to the following internal and external triggers:
– A family history of eczema, asthma or hay fever (the strongest predictor): if both parents have eczema, there is up to 80 per cent chance that their children may also develop eczema
– Some foods and alcohol: dairy and wheat products, citrus fruits, eggs, nuts, seafood, chemical food additives, preservatives and colourings
Irritants: Tobacco smoke, chemicals, weather (hot and humid or cold and dry conditions) and air conditioning or overheating
Allergens: House dust mites, moulds, grasses, plant pollens, foods, pets and clothing, soaps, shampoos and washing detergent
What are the symptoms of eczema?
Moderate-to-severely itching skin rash – dry, red, patchy or cracked skin.
Commonly it appears on the face, hands, neck, inner elbows, backs of the knees and ankles, but can appear on any part of the body.
Skin weeping watery fluid
Rough, ‘leathery,’ thick skin
The drug sets her back $20 a pop 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 would fork out $22,000 per year for the injections in an attempt to live a normal life.
‘Since I started getting it I can do so much more, I feel comfortable in shorts and I can lead a healthier, more active life,’ she said.
Prescriptions are given in six-monthly instalments.
‘I am worried that my body will become reliant on it and that I will have to take it for the rest of my life but at the moment it is my only real option,’ Alana said.
‘I took it a day late last time and my skin flared up a little – so I definitely can’t afford to miss it, which makes me scared my doctor will stop prescribing it too.’
The 21-year-old says she feels a huge change in her mental health since getting her skin under control
Both women said the way they see the world has been warped by the pain, itchiness, lack of sleep and feelings of embarrassment they experience from eczema every day.
‘I am getting all my housework done today because I feel good – and it is rare for me to not be itchy or in pain,’ Jess said.
‘I don’t realise how bad it is or how crappy it is making me feel until I have a pain-free day and it is amazing.’
The Eczema Association of Australasia Inc (EAA) is calling on government bodies to provide more support for sufferers and their carers through the National Disability Insurance Scheme (NDIS).