Career: Unemployed due to TSW
When did you cease using topical steroids: September 2014 last application of TS
What type did you use: Clobetasol, Triamcinolone, Fluocinolone and Protopic 0.1% ( I’ve also been on iv/ oral rounds)
What is your favorite product for comfort? Lemongrass balm, avene thermal spring water, & organic rose water
What is the hardest thing to deal with during this condition? The beginning days of TSW when I had cracks all over my face/ neck and oozing. Having my hands completely covered with RSS as well as oozing blisters on all my fingers. Self esteem has been shot down completely due to TSW as well as having anxiety.
What is the first thing you will do when healed? Wear a short sleeve shirt with jean shorts. Then I would take off to a beach and wear a bikini 24/7 and soaking up some sun rays.
Career: Systems Support Officer, University of Dundee, Scotland
When did you cease using topical steroids: 1st time Sep 2010, 2nd time was 6th Jan 2013 (however was on orals between Mar 2013 and Dec 2013). Date stopped using any type of steroids 21st Dec 2013
What type did you use: Hydrocortisone, Elocon, Dermovate, Betnovate creams/ointments. Also used Haelan Tape (tape impregnated with steroids), oral steroids (prednisolone), hair mousse (betnovate in it)
What is your favorite product for comfort? The turning point for me came when I started using a combination of Milton bleach solution on patches skin that kept getting infected along with Manuka honey under cotton gloves for my hands overnight. I also found using Moogoo shampoo, conditioner, baby bubbles wash and nut oil free moisturiser really helping. I also use a nettle moisturisers made locally in Scotland. I used several different products over the years, some helped at different stages of the process – for example, heavy 50/50 really helped my skin when it was red raw but trapped heat and bacteria in so in the long run actually made it worse, and more itchy.
What is the hardest thing to deal with during this condition? Recurring skin infections, lack of support from doctors/dermatologists, the uncontrollable itch, the pain, the wet feeling of ooze, feeling disgusted, the flakes of skin EVERYWHERE, depression, anxiety
What is the first thing you did when you healed? First thing I did when I got my first real break was go to Glastonbury festival and few months later got married, I did have several skin infections after this so it took a while longer before I felt truly healed.