A “NORMAL” party-loving girl has been left “feeling like a burns’ victim” after long-term use of topical steroids.
Rebecca Ebbage, 31, was left with crusty skin, severe hair loss and oozing nipples after she stopped taking steroid cream to treat her painful eczema.
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Back in 2022, the account manager had ditched her steroid cream given to her since she was a toddler to treat her skin condition.
But her life changed forever when her body became engulfed in itchy and weeping sores and she was forced to hoover up “bags of skin” daily.
Severe hair loss and constant oozing from her nipples are just some of the other symptoms Rebecca has suffered.
For the last two years, Rebecca, from Sandhurst, Berkshire, said her life has been “ruled by her skin” – with horrified strangers avoiding her on public transport and intimacy in her relationship being affected.
Read more on steroid cream
After spotting a video on TikTok, she realised she was experiencing symptoms of topical steroid withdrawal (TSW).
Topical steroid withdrawal is an adverse reaction that can occur after stopping use of topical corticosteroids – medicines applied to the skin to treat conditions like eczema and psoriasis.
Rebecca said the condition has left her feeling like a “monster”, and is now urgently raising money for alternative treatment to help get her life back.
She 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 stopped using the steroid cream used to treat her eczema since she was 11-months-old because she ran out and didn’t 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.
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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.
“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.
My life is ruled by my skin
Rebecca Ebbage
“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.
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“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 her GoFundMe page.
What is topical steroid withdrawal?
After stopping using topical steroids, other problems may develop.
Often, the original condition comes back, and in some people. severe reactions can occur.
The following symptoms may occur:
- redness of the skin which can extend beyond the initial area treated
- a burning or stinging sensation
- intense itching
- peeling of the skin
- oozing open sores
In patients with severe symptoms, hospital assessment is usually required.
Immunosuppressant therapies can be very helpful to alleviate the condition while the body recovers.
Source: National Eczema Society/Medicines and Healthcare products Regulatory Agency
