Brave Rebecca Ebbage, 31, began breaking out in painful weeping sores when she suddenly stopped using the steroid cream she had needed since she was just 11 months old
A woman with a painful condition who was “addicted” to steroid creams said she was left “feeling like a burns victim”.
Brave Rebecca Ebbage, 31, ended up covered in weeping sores and left having to hoover up bags of her own skin every day. She said she went through hair loss, crusty skin and oozing nipples due to the condition she said was because she was withdrawing from the medication she’d relied on for the last 30 years – known as topical steroid withdrawal (TSW).
Rebecca said she suddenly became covered in burning sores after her life had been “ruled by [her] skin”. She said strangers avoided her on public transport and revealed intimacy in her relationship had been affected.
In her brave recollection of her experiences, Rebecca said she was left feeling like a “monster” and is now raising money for alternative treatment. “My eczema was always very manageable, I lived a completely normal life,” she said of life before things drastically changed.
Rebecca used the same steroid cream since she was just only 11-months-old, but she stopped using it when it ran out and she did not renew her prescription.
“I was able to go out clubbing with my friends, wearing make-up and fake tan,” she recalled. “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.”
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.
“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.”
Rebecca, an account manager, said her partner is “is extremely supportive” but” I don’t feel nice about myself”. She added: “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.
She continued: “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?’.”
