A woman suffering from oozing sores after using steroid cream for decades has shared her horrific experience of the condition.
Sybil Marzin, an animation filmmaker, first began suffering from eczema symptoms when she was just four months old, often breaking out in "itchy" red spots across her body.
She relied heavily on steroid creams as a child and teenager, going through a tube per week as she believed it would help her skin.
However after quitting the creams in her 20s her skin turned red and flamed, causing her eyes to swell.
To her horror it also began to ooze, becoming so raw she could barely stand because of the pain. And she was eventually diagnosed with topical steroid withdrawal (TSW).
Sybil, 25, said "It affected me a lot, I had to stop working because it was too painful and itchy, and because I didn't want people to see me like that.
"It's a very visible disease, very difficult to look at and I didn't want people to be disgusted by me.
"When I began to experience neuralgic pains, I couldn't even go to do my food shopping or go to do my laundry, so I had asked friends to do it for me.
"I remember feeling really ashamed because my clothes were stained with blood, yellow stains from seeps, crusts and dead skin – it was very embarrassing.
“My skin was wet and itchy and began to turn into open wounds, which then scabbed and re-opened endlessly.
"My whole body was affected and my thermoregulation was completely out of order — I felt frozen to the bone.
"I have lost a lot of friends because it's hard to support someone who is experiencing this kind of illness and for such a long time.
"But I have also had some great friends help me with even the most awkward tasks."
Sybil says the condition has also negatively affected her relationships in the past.
She said: “My ex-boyfriend was really adorable with me, helped me a lot and supported me both mentally and physically.
"At one point, we weren’t able to be intimate together, as physical contact was very painful for me so it was very hard.
"In the end, TSW destroyed our relationship because it was too hard for both of us.”
Sybil, from France, has recently managed to find respite in some at-home remedies, and flare-ups are becoming less frequent.
After joining a Facebook support group and meeting other TSW survivors, she also felt relieved to find a safe space for sharing advice and reading others' experiences.
She says “ice packs” and bandages to “compress” the skin helps, and she has also invested in clothes that are 100% cotton.
She also no longer uses moisturisers barring a zinc-based cream that helps dry out the skin when it’s oozing.
She added: “TSW has been the hardest experience of my life and it remains a significant trauma for me.
“But this experience has made me incredibly stronger, today I put things into perspective a lot more.
"I think topical steroids are prescribed far too easily, and you have to look for the cause of the problem and not just treat the symptom.
"In my opinion, you must first eliminate all possibilities of the cause before giving a drug as strong as steroids."
