Mum spends $10,000 on painful condition affecting millions of Aussies: 'Face swollen shut'
Just three months into her first pregnancy, Sally Daly suddenly developed a painful and itchy skin condition. What started out as a 'slow-growing rash' soon spread and by the time she was due to give birth, it had 'taken over' her entire body.
Over the next few years, the Perth mum told Yahoo News Australia she spent around $10,000 and countless hours seeking out specialists and treatments to help cure her chronic health problem — eczema.
Close to three million Aussies are affected by eczema, including one in three children under the age of six, according to the Murdoch Children's Research Institute.
The country has one of the highest rates in the world for multiple reasons, including the local climate, Minister for Health and Aged Care Mark Butler said late last year during a press conference about the debilitating condition, which dermatologists argue can have a huge impact on a person's quality of life.
After developing eczema for the first time, Sally said she spent months 'trying every natural remedy' she could find but nothing helped ease the pain or halt its spread.
'Eventually, I saw a GP, who was hesitant to prescribe steroid creams while I was pregnant,' the 38-year-old told Yahoo. 'She referred me to a dermatologist who didn't do any tests — just took one look and said, 'It's eczema. Use steroid cream twice a week and taper off.'
'That 'short-term' solution ended up becoming a near-daily routine for almost two years.'
A few months before her son's first birthday in September, 2022 Sally decided to stop using steroids to treat the condition. However, the move didn't make the problem any better.
'That's when my nightmare began,' Sally said. 'One night, I woke up with my face swollen shut, my skin weeping and red, looking like it had been scorched. I had severe shakes, couldn't see properly, and my whole body felt like it was burning.'
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After reporting to hospital, Sally claimed she was sent home with antihistamines but no answers. Desperate for a solution, the 38-year-old said she turned to online support groups and quickly learned about topical steroid withdrawal (TSW), otherwise known as topical corticosteroid (TCS) withdrawal, which can occur after prolonged use.
'It all made sense. Every horrific symptom matched what I was going through,' she told Yahoo. 'At my worst, my husband had to take long service leave just to care for our son because I couldn't. I couldn't dress myself, couldn't pick up my baby, couldn't even be touched.
'My body was raw, flaking, oozing. I was so self-conscious I didn't want to sleep in the same bed as my partner. I was suicidal at one point. I truly felt like this was going to be my forever, and even advertised for a 'TSW buddy'.'
Eventually, Sally said a naturopath informed her she had pyroluria, which depleted her natural levels of zinc and B6.
'She also identified food intolerances and high steroid levels still in my system. She put me on a tailored protocol – high-dose supplements, homeopathics, no moisture therapy. It was incredibly hard, but things slowly started to improve,' the mum said. Sally said she got some relief from the burning and dryness using MooGoo eczema and psoriasis creams.
Six months on, Sally said she is walking again and is now able to go outside and play with her son. 'My skin is still dry at times — possibly due to winter – but I no longer feel like I'm living in a constant emergency. My mental health has done a full 180.
'If I could tell people one thing, it's that eczema isn't 'just a rash'. TSW is real, devastating, and completely life-altering. But there is a way through it. It's slow. It's hard, but healing is possible.'
Melody Livingstone, MooGoo CEO, told Yahoo the company has 'definitely seen an increase' in the number of people contacting them directly about their struggles with TSW.
'It's heartening that the Australasian College of Dermatologists now acknowledges TSW, and groups such as the National Eczema Society and British Association of Dermatologists are calling for greater awareness and investigation,' she said.
'Recovering from Topical Steroid Withdrawal requires a gentle and holistic approach to soothe irritated skin and repair the skin barrier. Maintaining proper hydration is crucial, and discontinuing topical steroids should only be done under the guidance of a healthcare professional.'
Recovery requires a gentle and holistic approach to soothe irritated skin and repair the skin barrier
People wanting or considering to stop steroid usage should discuss it with their specialist first
Maintain proper hydration
Remove harsh cleansers and soaps, replacing them with gentler options
Use a moisturiser with gentle and hydrating ingredients that don't contain irritants such as petroleum-based ingredients, parabens or phenoxyethanol
A thicker, barrier cream with ceramides is a good option as an additional step to lock in moisture and provide extra support in keeping irritants out of the broken skin.Do you have a story tip? Email: newsroomau@yahoonews.com.
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