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TSW Horror Story UK

By Shannine O’Neill

**EXCLUSIVE**

THIS WOMAN endured agony from her skin that went to war with itself leaving her house-bound for nine months and ending her nine-year relationship.

Operations & Wholesale Manager Rhiannon Kennedy-Chapman (25) from Manchester, England was left house bound for nine months, would bathe for eight hours every day and would be unable to sleep for more than two-hours every night because of Topical Steroid Withdrawal.

Rhiannon developed Topical Steroid Withdrawal, otherwise known as TSW, in January 2020 after using prescribed steroid creams for mild eczema for over three years.

Rhiannon had started to develop TSW symptoms a year after she started to use steroid creams, but was not aware of its true nature and so continued to use stronger steroid creams in order to improve her symptoms for a further two-years.

After the combined three years, Rhiannon stopped using steroids all-together and realised that she had actually been suffering from Topical Steroid Withdrawal.

The symptoms started with Rhiannon’s entire body turning red and inflamed and was hot to the touch as well as unbearably itchy and uncomfortable.

Rhiannon had actually learned about TSW from a creator on TikTok in May 2022 who was documenting her journey with TSW, and had very similar symptoms to Rhiannon.

At her worst, Rhiannon was house bound for nine months and didn’t see friends nor family due to the pain and discomfort she felt, alongside her confidence dropping drastically.

Rhiannon would spend more than eight-hours a day in the bath as it was the only place she was able to find any comfort.

Sleeping was also a difficult factor for Rhiannon as she would only be able to sleep around two-hours a night in total due to how uncomfortable and itchy her skin felt.

Rhiannon tried to improve her life by sleeping with an iced water bottle, having a fan in her bedroom, sleeping on her own with a thin weighted blanket and consumed sleeping tablets in a desperate attempt to help her sleep.

Every day was agonising for Rhiannon as she was unable to sleep, dress herself, or work during this time, causing her mental health to deteriorate.


Rhiannon’s mental health affected her so severely at the time that she ended her nine-year relationship with her boyfriend.

Rhiannon’s life turned upside-down as she became allergic to foods she had never had problems with before such as dairy and gluten.

Alongside this, Rhiannon’s confidence had completely dropped as she hardly recognised her swollen face at times and her body covered in rashes and open cuts, alongside losing around a quarter of her hair and eyebrows.

Rhiannon had tried to get help for her TSW symptoms, even taking herself to A&E on a weekly basis, phoning her GP every other day, when she finally was referred to a dermatologist but was still not treated for TSW.

Rhiannon had tried everything on the shelf to try and help her symptoms, alongside the doctor prescribing her medicine for scabies, Folic acid tablets for iron, lots of different moisturisers, camomile lotion, and a multitude of creams, but nothing seemed to help.

In the end, time was what has helped with Rhiannon’s TSW, as she now posts about her healing journey on her TikTok page @rhifay_ so that she can keep track of her healing and also share her story with others who may be facing the same prospects.

“I was using steroids for a year before I developed TSW however I did not know it was TSW at the time so I continued using stronger steroids for a further two years, until May 2022 then I stopped using them,” she said.

“I started using steroids to treat very minor patches of eczema on my neck, creases of my arms and legs.

“My whole body was red (red sleeve), inflamed, hot to touch and so itchy it was unbearable.

“I learnt about TSW in May 2022 from another girl who was suffering with TSW at the time and documented her symptoms on TikTok.

“I knew I had TSW from then.”

Rhiannon’s symptoms have been intense and have caused her severe pain.

“At my worst point, I was housebound for around nine months, I didn’t see friends or family,” she said.

“I spent eight hours at a time in the bath as that was the only place I found comfort.

“I was unable to sleep any more than two hours at a time, I would need to sleep with an iced water bottle, a fan and in a bed on my own with just a thin weighted blanket to help with the itch.

“I would buy sleeping tablets (diazepam) from people in a desperate attempt to sleep, and at the time, I did not want to wake up.

“I was unable to go to work, dress myself, or feed myself.”

Rhiannon’s mental health was severely affected by her trauma from having TSW.

“My mental health severely deteriorated as I was just existing and not living,” she said.

“My poor mental health affected me so much I have now split with my then boyfriend, of nine years.

“I became allergic to things I had never been allergic to before like dairy, gluten, all foods that I can now eat.

“My face would swell, I didn’t recognise myself, as well as the TSW rash I would be covered in open cuts and blood from the bone deep itch.

“I couldn’t make any plans or look into the future, I was taking one day at a time and on my worst days, I did not want to do life anymore. I also lost around a quarter of my head hair and my eyebrows which massively knocked my confidence.”

Rhiannon still struggles with her mental health now because of her ordeal.

“Although my skin has healed, this has had a huge impact on my mental health where I am now on anti-depressants and go to therapy weekly,” she said.

“I had to move out of the house I was living in at the time as the trauma of my health living there, I resented it.

“It affected my relationship with my boyfriend, friends and family and I am now on anti-depressants and started therapy to help me get back to a better mentality.

“At the time, I had zero confidence, I would not leave the house.

“My confidence has improved since my skin is better however I have ‘elephant skin’ on my hands, neck and face which does knock my confidence massively.”

Although Rhiannon has had to face depression, anxiety, full body rash, bone deep itch, insomnia, weeping skin, flaking skin, swollen face, inflamed arms and legs, hair loss, burning skin, allergic reactions to food and weight loss, the worst symptom of all has been the loss of her young life for the year she has sustained TSW.

“I felt like I lost years of my 20’s as I was hiding away and the condition was so debilitating I physically couldn’t leave the house,” she said.

“People have been really shocked at the pictures of my skin at my worst as I sometimes looked unrecognisable.

“I had lots of comments like ‘is that eczema?’, when I would explain it was TSW, they would just look confused and would not entertain it.

“My friends and family have been really supportive and after some time, acknowledged that what I was going through was TSW but at the beginning it was hard for them to understand as it is not a heard of, recognised condition.

“I have spoken to lots of people on TikTok and they have been amazing and really positive and supportive with my journey, without people sharing on TikTok I don’t know where I would be today.”

Rhiannon has been free of steroid use for over a year now, and has improved but is optimistic that with time she will heal even further every day.

“I have been free of steroids for just over a year, I tried all pills and potions to help speed up recovery, but time is the biggest healer, also if you can get some sunshine and a dip in the sea (although it stings!), these really helped me,” she said.

“I also went on an immunosuppressant called cyclosporine which took the edge off things for me.

“It is the worst thing I have ever gone through and it’s a lonely journey as it is not a recognised condition and not many people get diagnosed but things DO get better, just keep going.

“The ITSAN Support Group on Facebook and connecting with other people also going through this, really really helped me through my journey.

“It makes me so happy that the media are trying to cover this topic and educate people on this debilitating disease.”

ENDS