A woman left doctors baffled and thinking she had cancer on her skin after she was left hooked on eczema creams.
Bethany Jones, 29, says the ordeal has left her with horrific side effects after stopping steroid creams used to treat eczema.
The sales manager from Tunbridge Wells says that despite suffering from severe eczema as a baby, the creams her doctors gave her have left her with irreversible damage.
Since the age of two, she was prescribed topical steroid creams to help treat her skin, but used it sparingly on the affected areas.
Then, at 19-years-old, she was prescribed a stronger cream. This was due to suffering a flare up on her hands.
Since then, and while continuing to use this throughout her 20s, the creams soon stopped working.
"I started to experience an issue with them, as they were no longer working for me – I was in topical steroid addiction," Bethany told Jam Press.
"I decided to stop using the creams and it wasn't really an option to continue use, as they had no effect on me.
"[As a child] my parents saw a private dermatologist and my skin was under control for a long time after that.
"I remember only using the creams short term and my mum was very careful to use the amount as advised."
In January 2021, Bethany had enough.
After ditching the creams, her body entered topical steroid withdrawal (TSW) – severe symptoms in users of topical steroids who have stopped using the medication and subsequently experience red, burning and itchy skin.
Following this, she started experiencing nerve pain, bone deep itching, dizziness, night sweats, "oozing" skin which would often split, as well as hair and vision loss.
She recalls being unable to recognise herself looking in the mirror, saying: "I was on furlough at points, so I could hide away and if I did have to venture out, I'd cover fully with clothing, a mask, gloves and often a hat.
"I hated how I looked, my body and everything about myself.
"[I also suffered] from foul smelling, shedding and red skin, as well as insomnia and extreme weight loss.
"I had thermoregulatory issues, where I would constantly shiver and inflamed lymph nodes all over my body.
"It was very difficult for me to look after myself, as I'm extremely independent, so having to reach out for help wasn't easy. Friends had to help me bath, wash my hair and do basic tasks.
"It stripped me of so much body positivity and self-confidence, where I still get upset about how I look now and worry I'll never get back to how I was before."
Bethany added that this has been the hardest experience of her life, and claims she feels completely "uncared" for by doctors and dermatologists.
She said: "It took me four months to see anyone in person and I went to A&E in my worst point for help.
"I was told to moisturise and drink more water, where I was made to feel like I wasn't looking after myself property.
"I tried everything, diets, water filters on my shower, stopping use of deodorants and washed my clothes with no chemicals – the list is endless.
"I've lost a lot of trust for the medical system and at the beginning, I had a cancer scare.
"I had such enlarged lymph nodes, that the doctors told me my symptoms all pointed to lymphoma.
"I kept myself together at the time, but it was very scary and it's left me with post-traumatic stress disorder.
"It's affected me financially, as it's an expensive condition to maintain and manage – being unable to work properly for a long period of time with no financial support was extremely stressful."
At the beginning of her ordeal, she entered into a relationship and while her ex-partner was extremely supportive, their romance soon came to an end.
She said: "Our relationship lasted around 15 months of my journey and in all honesty, it didn't work out because this has changed me. I'm not the same person as before.
“He would help me if needed and he encouraged me when I decided to start sharing my experience."
However, Bethany believes that the condition has changed her as a person, which ultimately led to their relationship breaking down, saying: "It's been a hard journey, coming to terms with something when you have no idea what is happening or how long it will last is difficult.
"Although I've lost confidence, it has grown in other areas. I have stronger boundaries that I stand by now and I know what I want, who I am as a person, as well as the kind of person I want to be.
"I've gained confidence in being myself, but lost it about my appearance."
Currently, Bethany is going through UVB therapy. This is a form of ultraviolet rays that are used to help reduce inflammation in the skin, which in turn has helped to improve her condition.
She says that her daily life is becoming more manageable and she's been able to return to work without being in pain.
Bethany added: "I can go to work without wishing I could leave because my skin is so painful.
"I spend an hour a day managing my skin, before it was more so around five hours.
"It still does control what I can and can't do – I think about it constantly.
"I struggle to exercise as I flare from getting hot and I still have very bad fatigue.
"I can only wear certain fabrics and I can't leave the house without my creams or comfort items.
"TSW needs acknowledgement, it's passed off as either extremely rare or not even a condition.
"So many people go through this and are just fobbed off. I don't know where I would be right now if it wasn't for others sharing their story.
"I've completely had to change career because I could no longer work as an aesthetic practitioner.
"It's turned my world upside down and it's an avoidable condition that tears people's lives apart."
