An account manager was ‘addicted’ to steroid creams for 30 years to tackle her painful eczema – only for them to leave her with crusty skin and her hair falling out.
Rebecca Ebbage went from a ‘normal’ party-loving girl to ‘feeling like a burns’ victim’ as her body became engulfed in itchy and weeping sores and she was forced to hoover up ‘bags of skin’ daily. Just weeks before her body was ravaged by the painful condition in early 2022, Rebecca had ditched her steroid cream given to her since a toddler to treat her eczema.
The 31-year-old claims her skin was withdrawing from the medication she’d relied on for the last 30 years – a condition known as topical steroid withdrawal (TSW). Rebecca said her life changed forever when her skin became covered in burning sores, she began shedding ‘bags of skin’ daily, experienced severe hair loss and constant oozing from her nipples.
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For the last two years, Rebecca said her life has been ‘ruled by (her) skin’ – with horrified strangers avoiding her on public transport and TSW affecting intimacy in her relationship. Rebecca said the condition has left her feeling like a ‘monster’ – and is urgently raising money for an alternative treatment to help get her life back.
Rebecca Ebbage, 31, on nights out before her struggles with topical steroid withdrawal -Credit:Kennedy News and Media
Rebecca, from Sandhurst, Berkshire, said: “My eczema was always very manageable, I lived a completely normal life. I was able to go out clubbing with my friends, wearing make-up and fake tan.
“Then in 2022 something changed, it didn’t feel like eczema anymore. It felt like my body was on fire, I felt like a burns victim. From there my life changed forever, my life is ruled by my skin. I can’t do any of the things I was able to do before.”
Rebecca had weeks before stopped using the steroid cream used to treat her eczema since she was 11 months old when she ran out and did not renew her prescription. But her skin quickly became covered in flaky, dry skin as doctors advised her to up her steroid dosage to treat her symptoms.
Baffled by her worsening condition, Rebecca spotted a video on TikTok of a user suffering with TSW – and realised she had the same condition. Rebecca said: “This condition has stolen my life, I don’t recognise the person I am now.
“My lymph nodes were like golf balls, I lost all of the hair on my body, the hair on my head was falling out, my nipples would constantly ooze crusty, yellow fluid. I couldn’t shower or bathe because the water was like acid. One glass of wine can make me have an itch attack because you’re very sensitive to irritants and allergens.
Rebecca Ebbage, 31. has been left with topical steroid withdrawal after using creams for 30 years -Credit:Kennedy News and Media
“I lose bags of skin everyday. If I wear leggings, when I pull them down to go to the toilet, the inside of the black leggings is just covered in white where my skin has fallen off. I used to have to hoover my bed and floor every night. It affects everything. I don’t go out and socialise. It’s pretty much left me housebound.
“My partner is extremely supportive but I don’t feel nice about myself. We can’t do date night as a couple because I can’t dress up and put on make-up, we can’t go away on holiday, it’s really stressful. It’s completely put a stop in our relationship in terms of intimacy – normal things you do in a relationship we’ve just had to park.”
And Rebecca often faces upsetting reactions from the public in regards to her condition. Rebecca said: “I’ve had people ask me if I’ve been in a fight because my hands are so red and sore. I’ve had people at petrol stations when I’ve given over cash or card snatch it out of my hand as if I’m contagious.
“I feel like people are constantly looking at me thinking ‘what’s wrong with her?’ I’ve had people avoid me on public transport. I’m exhausted from constantly having to educate people on what’s going on. It would all go away if I were to begin steroid treatment again, which is really tempting.
“You’re constantly living in fear of what could set you off. The past few years have been a living nightmare. I look at pictures of myself before this process and I don’t recognise that person. I constantly think ‘will I ever go back to that person or do I have to accept this is it now?'”
Rebecca is currently fundraising for Cold Atmospheric Plasma therapy (CAP) to help treat her debilitating condition. To make a donation, visit: https://www.gofundme.com/f/topical-steroid-withdrawal-medical-treatment