Rachel
Age: 24
Career: Unemployed due to TSW
When did you cease using topical steroids: November 2015
What type did you use: Triamcinolone and desonide cream daily for over 10 years. Prior to using prescription strength creams I used over the counter hydrocortisone per my doctors’s advice for the majority of my childhood.
What is your favorite product for comfort? Icepacks for inflamed skin and A&D for cracked lips.
What is the hardest thing to deal with during this condition? It’s impossible to choose just one. The endless itching and full-body aches are absolute hell. The loss of confidence, self worth and freedom are close seconds to the physical pain.
What is the first thing you will do when healed? Grow my hair out and swim in the ocean.
Rachel Fee
Age: 41
Career: Stay at home Mum
When did you cease using topical steroids: November 22, 2013
What type did you use: Hydrocortisone, betnovate, eumovate, fucibet
What is your favorite product for comfort? Epaderm cream, mainly Vaseline and Aveeno in the bath. Aloe vere gel for hives.
What is the hardest thing to deal with during this condition? For me the pain, bone deep itch, the burning and constant shedding was a nightmare. Not being able to wear clothes, cuddle my kids leave the house took its toll emotionally. The insomnia was also quite depressing as there was no escape from the pain.
What is the first thing you will do when healed? My healing has been gradual but I have enjoyed and cherished everything in my life especially doing the school run again, going on my son’s class school trip, watching their nativities again. Also just being able to get up and out of the house easier without a two hour bath. I’ve not been swimming yet but is on the list of things to do in 2017. Finally, because I was ill when I turned 40, I am organising a charity fund raising party for Itsan on May 20th 2017 to raise money and celebrate life!
Preventable: Protecting Our Largest Organ 