We all may be walking beside each other, but our stories are never the same.
Name: Catarina Sams
Work: Project Manager
Date of Withdrawal:
First in 2020, then got hospitalized with eczema herpeticum and given steroids. Now steroid free and actually completely medication free since January 2022
What type(s) of steroids did you use?
Mostly hydrocortisone (my whole life) then just before TSW started Eumovate, Betnovate, Tacrolimus (not steroid but immuno) prednisolone (oral).
Are you on any other medication?
Not at the moment, but did use Cyclosporine for 3 months in 2021
Do you have a supportive doctor?
What is/was your favorite comfort product?
Depends on the phase I am in. At the moment as I am mostly dry Aveeno restore followed by vaseline (which I do not tolerate if on a flare).
What is the hardest thing you’ve had to endure during your withdrawal?
My mental health. I got very depressed initally and feeling hopeless really got to me to the point I left my home (which means also my husband and dog) for 3 months as I could not cope and needed to be on my own. I since have started therapy (psychoanalysis) which has helped me tremendously. I also do sound healing and breath work/ meditation. And I am happy to share that my marriage is now better than ever and I am dealing much better with the flares when they come.
What is one thing you are grateful for during the withdrawal process?
I am very grateful for the self discovery TSW has led me to. I learned that stress is my worst enemy and learned of traumas I had buried deep and didn’t realise I had. I am much calmer now (although, yes I freak out and explode at times during flares). I listen to my body, I learned how to better communicate and stopped repressing my emotions as I have done all my life. My relantionships are much better as a result as I finally learned how to set boundaries.
How did you discover you had TSW?
I have had atopic dermatitis since I was a newborn. It has always been manageable and I always flared in the same places, and due to the same triggers (stress, sweat…). When I was around 25, I almost didn’t have any eczema and felt that it was finally in full remission. I then moved to the countryside to a very old house and started feeling itchy all over my body which I assume was an allergic reaction to something. It wasnt like my normal eczma, but theGP at the time insisted it was, and gave me strong topical steroids. They worked until they didn’t and I then wasn’t just itchy but started having flares. She gave me tacrolimus, it also worked until it didn’t and the flares went worse and spread around my body. That surely wasn’t eczema and I realised the creams weren’t working at all and when I stopped them things got worse. I then researched online and found an instagram profile on TSW and the rest is history.
What were the first tell tale symptoms you experienced?
Red raw burning skin all over my face, neck and chest; red sleeves; swollen lymph nodes, insomnia, crazy bone deep itch; inabilith to thermoregulate; zingers.
What is one memory during the withdrawal that you will never forget?
When I used to sleep on the bathtub in the middle of the night as I was exhausted and the only place I felt some comfort was in the warm water. But also the fear afterwards to go out of the bath ans have to face the pain.
How is your TSW journey going?
My first year was hell and I got eczema herpeticum over my whole face. I was hospitalized for a week and forced to take steroids. I was then was bullied by a dermatologist to take cyclosporine. I then started therapy and prepared myself to start the withdraw all over again. So I stopped everything in Jan 2022 and since then I have been improving. I didn’t have a bad flare from April to November. I then flared a couple of times but it wasn’t nearly as bad as before and it went away quickly. My body is healed besides my face and neck. After flares now I feel a massive improvement on my skin texture.
If you had a call to action for the medical community, what would it be?
More research into TSW and education, especially to medical professionals.
What was a pastime you use to help during TSW?
I have always tried to keep my hands busy to distract myself. When I am itchy or in pain, I put sound healing on and play a game on my phone, such as colouring.
What is something you wish to share with the community?
There is no one size fits all and every journey will be different so please respect people’s choices. There is no right or wrong. Also you are all amazing and we will get through this! And when we do, we will be so strong and resilient. I am not on for toxic positivy but surely something good has to come out of this for all of us.
What is a quote you live by?
Piano piano si Va lontano. Which translates as ‘slowly slowly anyone goes further (in terms of success)’
What resources help during TSW?
- Preventable Documentary
- Skin on Fire documentary
- ITSAN website and support groups
- Scratch that UK.
- Countless warriors sharing their journeys online
What is your instagram handle?
Thank you, Cat.
We love you. We see you. We are you.