'I was housebound and had eight hours baths as only relief from skin condition'
A woman has told of being housebound with an excruciating skin condition where she would take baths for eight hours as her only relief.
Rhiannon Kennedy-Chapman, 25, from Manchester, was left housebound for nine months, found it difficult to sleep for more than two hours at a time during a nine-month ordeal caused by Topical Steroid Withdrawal.
She developed TSW in January 2020, after using prescribed steroid creams for mild eczema for over three years. She had begun to have symptoms, but being unaware of the condition she continued with the treatment and went on to use stronger creams.
The symptoms started with Rhiannon's body turning red and inflamed while being hot to touch and unbearably itchy. Eventually she stopped using the creams and found out she was suffering from TSW after watching a TikTok influencer who was documenting her journey with the condition.
She was housebound for nine months (mediadrumimages/Rhiannon Kennedy-Chapman)
Her skin was red and inflamed (mediadrumimages/Rhiannon Kennedy-Chapman)At her worst, Rhiannon was housebound for nine months and didn't see friends or family due to the pain and her confidence dropping. She would spend more than eight hours a day in the bath as it was the only place she was able to find any comfort.
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Sleeping was also a difficult 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. She tried different methods to improve her sleeping like with an iced water bottle and having a fan in her bedroom but they had little impact.
Rhiannon's mental health affected her so severely that she ended her nine-year relationship with her boyfriend and her life turned upside-down as she became allergic to foods such as dairy and gluten. Her confidence was affected by her swollen face while her body was covered in rashes and cuts.
She regularly went to the doctor's and the hospital before finally being referred to a dermatologist but still she was not treated for TSW. Rhiannon tried every medicine to help and even one for scabies but nothing seemed to help.
Her confidence was affected by the condition (mediadrumimages/Rhiannon Kennedy-Chapman)She is now sharing her story on TikTok to help others in a similar situation. "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."
She continued: "At my worst point, I was housebound for around nine months, I didn't see friends or family. 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.
She has used sunshine to treat the condition (mediadrumimages/Rhiannon Kennedy-Chapman)"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 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."
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She is now telling her story on TikTok (mediadrumimages/Rhiannon Kennedy-Chapman)She is sad about the time she has lost to the condition. "I felt like I lost years of my 20s 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."
Rhiannon has been free of steroid use for over a year now. "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."
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