Scarlet September, 12, lost her sight in one eye after developing suspected steroid associated cataracts after using the cream.
Just six when she was first prescribed steroid creams, Scarlet stopped using them she experienced topical steroid withdrawal (TSW) – symptoms of which include everything from burning, weeping red skin, to pus-filled bumps and hair loss, according to the National Eczema Society.
Her mum, Sarah September, 37, says Scarlet became so poorly she was often bedridden, suffered with red and burning skin, open, oozing sores, hair loss, insomnia and lost the sight in her left eye.
At one point, her mum said it looked like Scarlet had third degree burns and it was too sore to wear clothes.
Told by specialists at London’s famous Great Ormond Street Hospital (GOSH) in February that she had a “steroid associated cataract,” according to Sarah, she had two operations and was told by doctors in the UK and the US she had TSW.
Stay-at-home-mum Sarah, who lives in Barming, Kent, with her builder husband Christian, 38, their daughters Scarlet and Saphire, eight, and her son Louis, 17, from a previous relationship, said: “At one point in March 2020, her neck looked like an open wound – it was so red and sore.
“It looked like she had third degree burns and she couldn’t wear clothes.”
Sarah continued: “You could see her skin was opening up and thinning where the steroids had been applied. It was horrific.
“Then, in late 2020, she developed cataracts in both eyes and was having problems with her vision.
“She was only 11. It was terrifying. This should not happen to a child.”
Scarlet first developed patches of eczema on her neck and eyelids at the age of six, after a house move.
She was prescribed steroid creams by her GP – a common anti-inflammatory remedy used to treat the symptoms, which she suffered with during flare-ups once or twice a year.
But Scarlet’s subsequent problems, after developing TSW, have made Sarah a harsh critic of how readily they are prescribed.
She said: “I believe GPs and dermatologists need to stop prescribing so many steroids.
“Scarlet was prescribed steroids on and off, but we only used them when she was flaring.”
During a severe flare-up in early 2020, by then aged 10, Scarlet was prescribed topical steroid creams, which her mum applied sparingly to the back of her neck and her eyelids, as directed.
But her face became “redder and redder,” only for the livid reaction to soon cover her body.
Sarah said: “It went down her face, her neck, and then covered her whole body. She was luminous red from head to toe.”
Scarlet also developed a “bobbly, sandpaper-like” rash, which swab tests proved to be Staphylococcus, or staph – a type of bacterial infection that lives on skin surfaces – and was referred to a dermatologist or specialist skin doctor.
But Sarah was increasingly concerned that her daughter’s wider symptoms did not fit the profile for eczema or a staph infection.
By March 2020, Scarlet was so distressed she could no longer go to school, as her skin was so damaged, sore and painful.
Sarah said: “Her neck looked so sore and painful.”
Offered more steroids by their GP, Sarah became increasingly convinced that they were at the root of her daughter’s problems.
A friend alerted her to TSW and, after conducting her own research online, she found more and more cases that matched Scarlet’s symptoms.
She said: “I saw a friend post on Facebook about her son’s skin problems, and she told me about TSW.”
“I found out so much stuff about steroids and became convinced they were making Scarlet’s condition worse.
“With the staph infection, I’d already stopped her from using them, so she was withdrawing from steroids without me even realising.”
Taking her daughter to see a dermatologist in early March 2020, Sarah was massively disappointed when the specialist was sceptical about the existence of TSW.
She said: “By this stage, Scarlet couldn’t even wear a top properly.
“She had blankets wrapped around her.
“I just wanted someone to help me get my daughter better.”
The existence of TSW is still hotly debated by some medical experts, but the Medicines and Healthcare Regulatory Agency (MHRA) recently published a directive on topical corticosteroids (TCS), warning practitioners to be “vigilant for the signs of topical steroid withdrawal”.
Meanwhile, on March 13, at another GP appointment, to her relief, the doctor agreed with Sarah’s assessment that Scarlet had TSW.
She prescribed zinc wraps to soothe Scarlet’s skin and sent her to a local hospital for a second opinion, but she was told there that the condition could be fungal and was prescribed antibiotics.
When these failed to work, she was referred to GOSH – but faced a long wait to be seen because of the pandemic.
By then, her skin was so uncomfortable that she was regularly bedridden, as she was wrapped in zinc bandages to try and soothe the painful sores, and the little girl would lie awake at night, often screaming in pain and would sleep during the daytime.
Desperate for answers, in June 2020 Sarah paid £700 for an appointment with an American doctor, Dr Marvin Rapaport, co-founder of the International Topical Steroid Awareness Network (ITSAN), who prescribed Scarlet a strong antihistamine to help stop the itching and allow her to sleep.
She said: “It was a 30-minute phone call which cost £700.
“He went through the photos of Scarlet and said it was steroid addiction and withdrawal and told us if she ceased to use them – which she already had – she would heal. He said, ‘Give it a year’.”
By November Scarlet, who had already lost significant amounts of her hair, was almost bald, and Sarah spoke to the doctor at GOSH on the phone.
“She was very helpful. She said, ‘I just want to help Scarlet,’” said Sarah.
“She agreed it was TSW and told us lots of people, like Scarlet, do lose their hair from this condition.”
Meanwhile, doctors reassured the anxious mum that her daughter did not need to continue taking steroids.
But, soon after, Scarlet suddenly began experiencing new and even more distressing symptoms.
By November 2020 she had lost all her hair and was completely bald, while her vision began to cloud.
Sarah said: “She was complaining of her vision being blurry.”
Sarah continued: “She was still bedridden and really unwell, but suddenly she was hardly watching things on the iPad.
“I wondered if she had cataracts.”
And when her left eye turned from its usual green to grey “within days,” Sarah rushed her to the optician.
Referred to GOSH again, the family were told Scarlet had a steroid associated cataract in her right eye and a dense cataract with a detached retina in her left.
Sarah said: “GOSH saw her two weeks later. The doctor said straight away it was from steroids.”
Devastatingly, surgeons feared they may not be able to save Scarlet’s sight.
Her consultant, a paediatric ophthalmologist and retinal surgeon, stated in a letter that the chances of recovering good vision in her left eye were “limited.”
So, in April 2021, Scarlet had a lensectomy on her left eye – a 90-minute procedure removing the entire lens – but it was unsuccessful, as the eye was too damaged, meaning she lost the sight in that eye.
Fortunately, her second hour-long procedure in July, to treat the cataract in her right eye, was a success.
Sarah said: “Scarlet lost the vision in her left eye. They couldn’t reattach the retina as she was too scarred, but the cataract surgery in her right eye went well.
“She can see a million times better than she could before.”
And, despite her ordeal, Scarlet is well on her way to resuming a normal life and has replaced steroid creams with Balmonds Skin Salvation, a natural moisturiser for extra dry skin, costing £7.99 from a chemist.
“She hasn’t touched any steroids since the end of February 2020,” Sarah said. “You wouldn’t know she had eczema or had any of this going on. Her skin has 95 per cent healed now.
“She uses the moisturiser every day and there’s no burning or irritation. It’s the only thing she puts on her skin to help make it softer. It’s a good, effective, safe emollient for eczema-prone children.”
Sadly, Scarlet has had to be put back a year at school, because of all the time she missed.
Sarah said: “She gets very sad at bedtime when she thinks about everything.
“But her hair is about two inches long now and she says it’s so much easier to deal with. She says, ‘At least I’ve got another eye.’”
Now determined to raise awareness of the risks of prolonged use of prescription steroids, Sarah does not want anyone else to face the problems Scarlet has had.
She said: “She has been incredibly brave, but no child should have to go through this.”
While not all medical experts accept TSW is a condition, the National Eczema Society and the British Association of Dermatologists published guidance in January 2021, stating: “Some people experience problems when they stop TCS treatment after some time. These effects are sometimes referred to as topical steroid withdrawal (TSW) syndrome.”
Meanwhile, Giles Edmonds, Specsavers clinical services director, confirms that steroids can affect eyesight.
He said: “While steroids can be extremely effective, they may also cause a number of side effects with your eyes and vision.
“Steroids have been linked to causing or aggravating serious eye problems such as glaucoma and cataracts.
“If you begin to experience blurred vision or other problems with your eyesight, it is vital that you seek help from your optician.”
Chief Nurse Paula Wilkins at NHS Kent and Medway Clinical Commissioning Group expressed her concern for Scarlet.
She said: “We’re sorry to hear about this patient’s experience.
“All prescribers across Kent and Medway should be aware of the potential side effects of topical steroids and will make sure that patients know how to use them safely and effectively.”
She added: “We regularly update all of our GP practices with the latest national advice around steroids, including the MHRA update published last week.”
Scarlet’s family are fundraising to support her as she recovers. To make a donation, visit: https://www.gofundme.com/f/scarlets-tsw-story
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