Dealing with eczema, TSW and various other skin conditions can be tough. So it makes sense that living with these conditions and overcoming them builds us warriors to be strong, determined and responsive people. Not only that but I’ve seen first hand from my experience with chronic eczema and from the Eczema Life community that having a chronic skin condition builds considerate, accepting, caring and grateful people. When you have a skin condition you often feel thankful for ‘small’ everyday things including ‘itch free, eight hour slumber’ and wearing shorts in Summer.
This week's warrior Claire, or as she's know on instagram @theendlessitch, is strong, grateful and passionate about helping people going through TSW and eczema from her own personal journey.
Here is Claire...
“I first developed very mild eczema in my arm creases when I was about 12 years old. Of course the doctor prescribed a steroid cream and little did I know then that this would lead to a lifetime of persistently worsening skin.
My eyelids and face began to flare from about aged 13 and my whole teenage years were fraught with facial ‘eczema’ where I was prescribed steroid cream time and time again. I was never informed of any long term damage except that it may thin the skin. They always told me not to apply to my eyelids, but still prescribed the creams after looking at the affected areas. I’d been for every allergy test under the sun but couldn’t work out what was flaring my ‘eczema’.
By the time I was in my 20’s I was being prescribed 6 tubes of Elocon each doctors appointment. I was always told I had a ‘worsening eczema’. I would rub on my affected areas as prescribed twice a day.
There were days, weeks, even longer when I wouldn’t need to apply the cream but my skin would always flare after a while and I would have to go back to my trusty tube of Elocon. I wouldn’t go on holiday without a tube in my bag and I was eating antihistimines daily to try and help flaring.
By Nov 2019, I had developed a red rash all over my stomach. It hurt like acid to have a shower and the seams of my clothes caused me to wince in pain. Again the doctor prescribed topical steroids but this time I was given Prednisone (oral steroids). The Prednisone was like a wonder drug – seemingly curing my red skin within days. I could shower, wear what I wanted and live my life. It was such a relief.
This was too good to be true though and when the prednisone wore off, the red skin came back with a vengeance. It spread to my entire top half of my body and face. I was put on three more courses of prednisone and each time it got worse. I scoured the internet for hours to work out what was causing my allergy? Eczema? Reaction? I decided I didn’t want any more prednisone and needed other answers.
On a late night search I discovered a story about Topical Steroid Withdrawal (TSW) and the first stage of Red Skin Syndrome (RSS) and the symptoms listed described everything I was experiencing: red skin, burning, skin sensitivity, severe itch all worsening after using steroids. This was my lightbulb moment – I knew this was what I was experiencing 100%. Why then had I never been educated about this? Why had no doctor warned me that this could happen? Why was I having to do this research myself when my doctor was busy prescribing more prednisone?
Thankfully my research led me to Karen Fischers book and it changed my world. I’d initially tried to go off Topical Steroids cold turkey and I lasted 6 days. The itch was so intense I couldn’t cope. I couldn’t sleep or work or look after my children properly.
Karen doesn’t recommend cold turkey, rather outlining a tapered process and I began that whilst getting my body in the best condition I could ready for the withdrawal I knew was to come. I took the AM and PM supplements and completely overhauled my diet – religiously following the Eczema Detox book. Once I stopped using the creams, my body had stopped being red all over. That was the biggest relief.
Fast forward now 14 months and it has been a long road. That intense itch was just the beginning, I’m not going to lie, the symptoms that followed were Immense and all consuming. I haven’t slept properly in a long time, I haven’t had a full shower or bath for a really long time. BUT I am on the mend. The only places that itch now are my stomach and wrists and I know they are healing. This in itself is INCREDIBLE and I can work and be the mother I am meant to be.
I still eat as per Karen’s guidelines and follow the recipes and Facebook page all the time.
Having Karen not only acknowledge TSW (as a professional), but give tips, photos and insight into the condition was a turning point I am forever thankful for.
The education Karen has provided has changed my life."
We are so grateful to the beautiful Claire for sharing her story and all the amazing work she’s doing on her instagram page to help others. If you are struggling with eczema or TSW we highly recommend her page as she offers so many amazing tips, support and inspiration to heal your skin and yourself. You can find it here.
If you have an eczema story you’d like to share with us please email us at firstname.lastname@example.org.
Article by nutritionist Bonnie, who works with Karen Fischer at Skin Friend and Eczema Life.
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At Eczema Life, we recommend following a low food chemical program based on nutritionist Karen Fischer's 'The Eczema Detox' book. Along with our additive-free supplements for skin health and wellbeing.
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