I am stopping counting the days for now at least. It is 510 days since I last used topical steroids but I now believe I have been suffering from TSW symptoms unwittingly since 1989. I am sure I was addicted by the age of 21 so the clock starting ticking thousands and thousands of days ago ! I know because back then I lived in Italy for 6 months. My stock of topical steroid creams from the UK ran out after 4 months and I became really ill with what I thought was a chronic eczema flare up. Italian doctors did not want to prescribe topical steroids and provided an alternative treatment. I got worse and worse. I returned home in a bad way to immediately get to my GP and get my topical steroid prescription.
I won't be posting for a while now. I want to focus on my own recovery and enjoy being well. I will leave here on my blog my thoughts and experiences that I have posted over the last year including the gruesome photos. They are there simply to hopefully reassure others that things improve with time and if possible avoid topical steroid treatment in the first place.
It is all about sharing the message and supporting others. Nothing else matters. TSW is not owned by anyone! I am afraid there are individuals out there (medically trained) who think they have some kind of copyright on it - very sad.
I'll continue to try to contribute to TSW research studies that aim to contribute to new knowledge but only where health professionals collaborate fully with patients and their carers.
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