(photo of Scratch That founders courtesy of Holly Broome)
If you’re going through topical steroid withdrawal, you’re very likely to need support and advice both from those who’ve already been through it themselves, and those who are on the same path at the same time as you.
In fact, getting support from peers is widely acknowledged to be one of the most helpful things you can do for yourself while going through TSW.
Here’s our list of people and organisations you can go to for all things TSW.
The International Topical Steroid Awareness Network, ITSAN, was originally formed in 2012 to raise awareness about Topical Steroid Withdrawal Syndrome, also known as Topical Steroid Addiction or Red Skin Syndrome. ITSAN has grown into the biggest online community of TSW sufferers around the world, and provides clear, up-to-date information about the condition, as well as peer-to-peer support and advice.
Find ITSAN here:
Scratch That is an organisation being set up to provide information, reassurance and support for those affected by topical steroid withdrawal syndrome.
You can find it on Instagram here.
Scratch That Go Fund Me campaign
Read Scratch That founder Holly Broome’s blog about how finding a community online can help: Getting Through TSW: Empowering Other Sufferers.
Balmonds Info Hub
As a small UK skincare company with many friends and customers who have suffered the effects of topical steroids, Balmonds has always wanted to provide information about the ways in which people manage their withdrawal from steroids.
We publish personal blogs from those going through TSW, amplify their voices, raise awareness of the condition, as well as produce gentle, natural skincare that can help manage both the original chronic skin condition topical steroid creams get prescribed to treat, and the distressing symptoms of topical steroid withdrawal syndrome.
Browse our TSW Info Hub.
Briana Banos’ ground-breaking documentary that charts her exploration of TSW across the globe is a powerful film to show to loved ones, friends, family members and medical professionals.
Read Briana’s blog about the making of the film here: (Wo)Man in the Arena
Dr Keji Sato pioneered No Moisture Treatment for TSW at his clinic in Osaka, Japan. He accepts in-patients, and supports their recovery through an intensive therapy which involves drastically reducing the moisture in and on their bodies.
Read our blog What Is Dr Sato’s No Moisture Treatment?
Dr Marvin Rapaport
A website curated by Dr Marvin Rapaport, one of the few dermatologists who both acknowledges and treats RSS/TSW.
His website is here: Red Skin Syndrome.
Ruth Holroyd’s award-winning blog also includes information, encouragement and helpful ideas for getting through TSW. She sends regular newsletter via email and broadcasts via podcasts.
Our Prescribed Hell
Louise King is the UK’s biggest TSW influencer and her skin story has featured in many national media stories. You can follow her on instagram: her handle is louigi.skin.
TSW Assist provides crowd-sourced recommendations for managing topical steroid withdrawal (I suffered from this for 6 years and still do). Their goal is to empower the TSW community with data and solutions to manage their topical steroid withdrawal journey. These recommendations on products, routines and therapies are provided by the community, for the community.
Hashtags to follow on Instagram:
#TSW #TSA #Redskinsyndrome #thisisnoteczema #TSWFab5 #TopicalSteroidWithdrawal #steroidinducedeczema #topicalsteroids #topicalsteroidaddiction #unhideeczema #eczema #tswwarrior #eczemaawareness #skinpositivity
Do get in touch if you have resources to add to our list!
Current medical advice is not to use daily topical steroids continuously for more than two to four weeks; then the frequency should be tapered to twice weekly use.
Recommended products for those suffering from topical steroid withdrawal syndrome:
Skin Salvation is a safe, effective, non-steroidal, intensively hydrating emollient that works in four crucial ways to help you manage TSW or chronic dry skin:
- It is free from the preservatives, perfumes, parabens, essential oils, coconut oils, nut oils, soya, and other common irritants that can hurt so much when applied to such sore. sensitive skin.
- It nourishes depleted skin with the essential fatty acids, vitamins and other nutrients the epidermis needs to repair and regenerate.
- It uses beeswax to protect broken or raw areas by providing a fine, protective barrier over the skin - like a sticking plaster over a wound - reducing itchiness and stinging.
- It hydrates, softens and conditions severely dry, flaking or shedding skin.
Balmonds Intensive Lip Balm (34.99 for 10ml) is good for when lips and eyes are cracked and extremely sore.
Balmonds Natural Shampoo & Body Wash works as a soap-free, scent-free and irritant-free shampoo/body wash (£19 for 200ml)
Balmonds Rosehip Scar Oil with rosehip, lavender, chamomile and grapeseed oil (£18.99 for 50ml)
If you require medical advice we recommend you always contact your healthcare professional.
If you or someone you are caring for seems very unwell, is getting worse or you think there's something seriously wrong, call for emergency services straight away. For general medical advice, please contact your healthcare professional, this article does not contain or replace medical advice.
Do not delay getting help if you're worried. Trust your instincts.