An otherwise healthy woman in her 30s has been struck down by a "debilitating" condition she says has "ripped away" life opportunities - and because the condition doesn't have an official clinical diagnosis, getting treatment has been a nightmare.
Chester-le-Street raised Laura Shaw, 33, has suffered from Topical Steroid Withdrawal (TSW) for three years. The recently-married comedy producer should be in the prime of her life, but over the past couple of years she has spent months almost bed-bound, and even had to move home to her County Durham parents for support.
She is now fundraising to pay for a treatment called Ultra-Pulse Contact CAP therapy - which has previously helped to alleviate her symptoms. She hopes a longer course - not available on the NHS - could help banish the "bone-deep" itching and pain for good.
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Laura told ChronicleLive about her experience. She said: "Recovery from this is such a long, drawn-out process. TSW is so, so common.
"I have had eczema since I was a baby - and I started using hydrocortisone cream as a kid. Throughout my life it's been there, it flares up - but you live a normal life. Then in 2019, I got a rash on my back - probably just as a result of stress. And I was prescribed a really strong steroid. I used it as advised, but slowly I started to get more rashes in different places but I still just put it down to the eczema.
"By September 2020, it was like nothing I had ever had before. I was so uncomfortable, it was like nothing I had seen."
Her symptoms have included a "bone-deep itch", debilitating rashes and flaky, inflamed skin across her face and body - especially on her neck and back. And they have seen her spend hours in the bath, desperate for relief, and even contemplating suicide as depression hit.
Her relationships have been strained, and she's lost hair, two stone in weight, and hours upon hours of sleep. She said the awful condition was at a stage which made life almost unbearable during flare-ups. She said it was a coincidence that helped her understand what she was experiencing.
"I had a friend who was going through TSW and they said 'actually, I think you might be going through this too'. I did some research and all of the symptoms were the same as those I was having.
"So at least I knew what it was, but there's really not much help out there. In February 2022 it got to the worst it has been and - though I usually live in London - my mum and dad are in Chester-le-Street and I had to go back to live with them. It was so so severe - my parents became my carers, even helping me use the toilet. I could barely get out bed. It was so horrendous.
"It can die down but then within two weeks I'm back to being bed bound. And every time you go the doctor they offer you a steroid cream."
Laura had some treatment last year privately. The therapy is offered in the UK by people who have themselves lived through TSW. Now she hopes an extended treatment could solve the problem for good.
She spoke about the impact on her life, adding "I'm 33 now and we just got married. Of course I usually live in London, but even now I have been at my parents for the majority of this year. I had been having this really good life - I have my own comedy production company - but I have had to step back from that.
"Me and my husband would love to start a family, but because of this, things like that feel they have been ripped away. Previously in life I had been quite confident, but TSW has stripped me of that."
Campaign groups such as Scratch That are fighting for an official clinical diagnosis of TSW to be recognised, and the hope it that this would help people like Laura to access treatment more easily.
The NHS's website guidance on withdrawal symptoms from the use of topical steroids says: "If you stop using topical corticosteroids after using them continuously for a long time (usually over 12 months in adults), you may have a withdrawal reaction. These can sometimes be severe. Your doctor may advise stopping the treatment gradually to avoid this."
To support Laura's fundraising, visit gofundme.com/f/318aqy5120
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