After a shock health scare in 2023, there are times when Summah Williams wants to cry. But even that has consequences.
A girl is now allergic to her own sweat and tears following an eczema “flare up”.
Summah Williams, 11, was diagnosed with eczema as a baby but the condition had always been mild up until late last year when her skin started “shedding like a snake”, leaving her unable to move or even maintain a normal body temperature.
The Queensland girl’s mother, Karyn, says her daughter repeatedly developed staph infections – symptoms of which include redness and swelling of the infected area – but they had been controlled by commonly prescribed medicines.
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“We were using a lot of cortisone and antibodies to clear that up. We weren’t sure what was causing it,” she said.
“It just went out of control. She was red raw, swollen, her face started peeling. She was freezing all the time. So itchy.
“(The hospital) said she had a staph infection. She was on antibiotics for five days. But once she started antibiotics, her whole body just started to shed like a snake.”
“It was awful to watch, it was very confronting.”
While doctors put the scary event down to severe eczema, Williams believes her daughter’s flare up was a case of Topical Steroid Withdrawal (TSW), caused by continued use of topical steroids used to treat eczema, such as cortisone.
Victorian Dermal Group medical practitioner, Goran Gacovski explains that TSW can occur “when a person suddenly discontinues or reduces the use of these topical steroids after long-term usage, leading to withdrawal symptoms… such as redness, oozing, itching, and skin peeling, among others.”
“Symptoms can persist for years but often decrease in severity over time.”
To move away from steroid creams, Summah was placed on a new, injection-based medication called Dupixent, which has cleared up 80 per cent of her flare ups.
“So it’s helped her,” explains Summah’s mum.
“But now we have side effects around the face and neck which are quite red, quite severe around her eyes.”
Summah also lost hair on her eyebrows in her flare up.
“She just doesn’t look like she did before.”
“She’s always like ‘why was I born this way?’”
Emotions run high especially when Summah’s skin is feeling itchy. But perhaps one of the most brutal side effects of the new medication is that her skin retaliates to even her tears.
“She gets really self-conscious and cries,” details her mum, “asking why she can’t be like her friends with lovely skin, but then gets ‘panda eyes’ when she cries as she’s even allergic to her own tears and sweat – which is heartbreaking as she loves dancing.”
Despite all her struggles, she has remained resilient, continuing to pursue her dream of one day being a professional dancer. Summah, who has won awards for dancing, is back in the studio and grateful for the friends she has at dance that support.
“She still has a positive outlook on (dancing). Still wants to have a career in it.
“I just keep telling her, you know, it will be okay. It’s not going to be forever.”
Williams is determined to seek answers and raise awareness about TSW, after struggling to get the right diagnosis for Summah, despite telling medics repeatedly she suspected she had TSW.
“That was what made me quite angry in the hospital. Because I was trying to say this isn’t normal eczema, this is TSW. I’ve read a lot about it, but it’s kind of dismissed by dermatologists.
“But so many people are suffering from the flaky, red skin. It’s … people going through all the same things and they’ve all used steroid cream.
“When you stop it, it just goes haywire. There’s not enough information around.”
President of the Eczema Association of Australasia, Cheryl Talent, affirms that “information, especially in Australia is very varied and there are not many medical practitioners who are experts in managing this condition.
“Medical practitioners in general have not up to now recognised TSW as an actual condition, although slowly this is changing.”
But the lack of awareness has “now become a huge problem concerning the use of topical steroid treatments,” Talent believes, with even a “topical steroid phobia” now existing in the public domain.
“If used appropriately, topical steroid treatment can be really helpful in managing many skin problems, predominantly eczema.”
Gacovski recommends to simply limit usage, follow prescriptions, and gradually reduce the use of topical steroids under medical supervision.
Eczema affects up to 30 per cent of the Australian population at some point in their life, and CEO of natural skincare brand MooGoo, Melody Livingstone says the recent erratic weather changes can contribute to flare ups.
“With what we’re experiencing now with extreme heat and humidity, we always see a spike in calls and inquiries about how to manage your eczema.”
She recommends Aussies prone to eczema to keep the skin cool, avoid harsh soaps and detergents and moisturise regularly to maintain a healthy skin barrier.
“Unfortunately, if you do suffer from skin sensitivity. You do have to be a bit more vigilant about your day to day routine and what you use on your body.”
