A 20-year-old student says that she would “do everything” to get her childhood eczema back after a suspected current steroid back (TSW) made her skin so painful that she had to stop at the university.
Bethany Gamble, from Birmingham, has used current corticosteroid cream to treat eczema on her face and body since the age of two.
While the creams initially relieved its symptoms, they became less effective as she got older and at the age of 18 Bethany began to experience extreme flare-ups, described as a burning itch “deep in the nerves”, “seeping” wounds and hair loss so seriously that she was a shield.
The debilitating symptoms, including insomnia and Beddendo, forced her to leave the university in 2023.
Gamble believes that she is suffering from TSW, a suspected extreme response to long -term use of steroids, after finding others with similar experiences on Tiktok.
But although Bethany is convinced that this is the cause of her pain, doctors have refused to officially diagnose her and, instead, stated that the condition is only extreme eczema.
Bethany said she had trouble maintaining her eczema as she got older (collect/pa real life)
She recently joined a group of TSW patients to deliver a petition to Downing Street and called on the medical community to 'acknowledge' the condition for which experts have said that there is a “urgent need for high-quality research”.
“It burns a lot, it feels like your skin is on fire, as if hundreds of pieces of glass are stabbing in your skin,” said Bethany.
“I would do everything to have my eczema back – I'd rather have my original eczema for the rest of my life than TSW for one day.
“Almost everyone in the medical profession will not acknowledge it, and there are only a select few people throughout the country who will do that.
“I would just love a diagnosis, I would like to be listened to, and I would like to hear that I really have TSW.”
Bethany said that she has already applied the best part of 17 years of current corticosteroid cream to her skin to illuminate her eczema symptoms of “itching” and “bleeding”.
“The creams have different potentials and strengths, and as you get older, they gradually stop working until you get it stronger and stronger,” she said.
She added that she was eventually prescribed oral steroids because she had reached “the top of the ladder”.
Bethany has called on the medical community to recognize current steroid withdrawal (Collect/PA Real Life)
Bethany said she had trouble maintaining her eczema as she got older because the medication became less effective – but her symptoms got worse around the time she turned 18 in 2022.
She suddenly struggled with burning, inflamed and “bright red” skin, “a lot of trickling”, felt extremely itchy “deep in the nerves” and hair loss to the point that she finally shape it.
“Eczema does not have these symptoms … I knew something had to be wrong, and even my mother said that eczema is not bound you,” she said.
Also experienced extreme insomnia because of the inconvenience, Bethany continued to use her medication because she “did not know what TSW was at the moment”.
Eventually she had to leave the Academy of Contemporary Music in Birmingham in May 2023, where she studied for a degree in music production.
“It is sad that I was unable to finish my diploma. I don't think I will go back when I have to go to work,” she added.
Bethany said she would 'do everything to have my eczema back' (collect/PA Real Life)
Bethany felt “lonely” and “isolated” and struggled with her symptoms and desperately sought a diagnosis.
She came across TSW on TSW and felt that she resonated with many others on the platform – where the TSW hashtag has more than one billion views.
“I investigated it a lot and spoke with different people and came to the conclusion that it was what I had, I made my own diagnosis,” she said.
Bethany said she has since been told that she is suffering from extreme eczema.
“If I brought it to my doctor, they would say that TSW is false or rare or does not exist – they will just say it is eczema,” she said.
“Even if they agreed with me, I don't think they could even diagnose it because TSW has no diagnostic criteria; it is not yet in the medical world.”
Bethany is still struggling with the condition and has been taking immunosuppressants since September 2023 to try to keep its symptoms at bay.
“I use steroid creams almost all my life, so it's hard to say how long I will experience this – I am certainly not out,” she said.
Bethany said her skin 'burns a lot' (collect/PA Real Life)
Bethany has called on the medical community to 'acknowledge' the condition and last month participated in an annual Mars around Central London, together with others who suspect they have TSW.
The group handed over a petition to Downing Street on 29 March and asked the government to assess prescription protocols for current corticosteroids.
“The community tries to put it forward – we want people to know it is real,” said Bethany.
A joint statement from the National Eczema Society, the British Dermatological Nursing Group and the British Association of Dermatologists recognizes TSW and the urgent need for high -quality research into the situation.
Although it said that subject corticosteroids are a safe and effective treatment for many people and most side effects are known, the group of side effects known as TSW is generally less well understood.
The explanation also said that there are many challenges for understanding and managing TSW, and a lack of a clear medical definition can make it difficult for health care professionals to speak with those who experience these reactions.
According to the NHS website, people who have been using current corticosteroids for a long time have to talk to their doctor to revise their treatment where they can be advised to gradually stop to prevent a withdrawal reaction.
Those who stop using topic corticosteroids after continuous use of them for a long time, usually more than 12 months in adults, can have a withdrawal reaction that can sometimes be serious.
