We all may be walking beside each other, but our stories are never the same.
Name: Rakhi Roy
Work: Registered Dietitian & Actress (paused acting career due to eczema – this was before I went into TSW several years ago, but I’m back now and booking work)
Date of Withdrawal:
Stopped steroids on body during my teen years and switched to protopic. Started using steroids only on hands from 2018-2020 which is when I went into TSW.
What type(s) of steroids did you use?
Betamethasone cream, Clobetasol ointment, Halobetasol ointment, Hydrocortisone 1% cream
Are you on any other medication?
I take montelukast for my asthma and albuterol sulfate (non-steroidal) also for asthma as needed for environmental triggers.
Do you have a supportive doctor?
What is/was your favorite comfort product?
Minera Dead Sea salts for baths and Skinsmart spray
What is the hardest thing you’ve had to endure during your withdrawal?
Oozing, non-healing wounds on my hands,feet, and nipples. It made using my hands for daily activities of living, wearing clothes and walking difficult.
What is one thing you are grateful for during the withdrawal process?
The help and support of my family when I wasn’t able to reach for things and being able to work remotely for 3 days out of the week.
How did you discover you had TSW?
In 2018 I started working in the hospitals where the harsh soaps and hand sanitizer was very irritating on my skin. I began reaching for hydrocortisone over-the-counter to calm the inflammation on my hands only and when that didn’t work I began to rely on stronger and stronger prescription steroids until they stopped working and parts of my body started flaring where I hadn’t even used the steroids. I began connecting with people in the Instagram community talking about TSW and realized their experience was similar to mine and it wasn’t just eczema.
What were the first tell tale symptoms you experienced?
Red sleeves of my wrists and elephant skin of my knees.
What is one memory during the withdrawal that you will never forget?
There was a time where I was oozing non-stop for 2 weeks especially around my neck. The wetness was so uncomfortable it would wake me up in the middle of the night. I couldn’t even leave my room or take a bath for 2 weeks. The smell coming from my body made me nauseous.
How is your TSW journey going?
I’m no longer in TSW and my pigment is returning. I only experience contact dermatitis flares which clear quickly. Many of the wounds I worked with in the nursing homes looked similar to TSW and the technique we used (moist wound healing + increased nutrition support) worked. I tried it out on myself and I saw results in as little as 2 months. I also started working with an aesthetician for my face that made the biggest difference. Internally I had a lot of digestive issues, mainly fungal around my neck which I supported with supplements and diet to help clear.
If you had a call to action for the medical community, what would it be?
Start looking at TSW patients like wound patients not eczema patients. The skin barrier has been so severely damaged that the integrity of the skin and microbiome have to be restored. You wouldn’t throw lotions and steroids at a wounded burn patient and the same practicality needs to be applied to TSW as well.
What was a pastime you used to help during TSW?
Listening to music that calmed my nerves while I soaked in a tub of dead sea salt.
What is something you wish to share with the community?
1. SIMPLIFY your skincare & DIVERSIFY your diet. Different things will work for different people, but this philosophy rings true for most. Most of us are over-complicating our skincare routine which is hurting the microbiome. Our skin has the beautiful ability to rebuild itself if we go back to the basics.
2. Don’t be scared to ask for help when you’re stuck. You don’t have to do this alone, and you’re not being a burden.
3. Follow content that isn’t just related to TSW. Have an identity outside of your skin and know that you have everything within you to heal.
What is a quote you live by?
Peace – It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.
What resources help during TSW?
What is your instagram handle?
Thank you, Raki.
We love you. We see you. We are you.