FOR CAREGIVER PARTNERS

Topical Steroid Withdrawal Syndrome affects the entire family and it can be heartbreaking to watch a loved one go through TSW. Partners and caregivers have reported experiencing loss, despair and depression. Every partner and caregiver deserves support and to know that change for the better is possible. On this page find:

  • Mental Health Support
  • Member Recommended TSW Supportive Doctors
  • Medical Resources For Your Loved One To Share With Their Doctor
  • TSW Coping Tips
  • Global TSW Support Groups
  • Global TSW Resources

FIND SUPPORT IF YOU ARE IN CRISIS

TSW affects everyone in the family. It is ok to need help and it is brave to speak up about what you are going through. Caregivers deserve love and support too.  

If you are in crisis, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), or text the Crisis Text Line (text HELLO to 741741). You are not alone and you deserve to feel better.

If outside the U.S. please reach out to a trained and caring crisis support provider near you. Find a list of suicide crisis lines in many countries worldwide here.

Please note: these resources are not vetted by ITSAN and ITSAN claims no affiliation.

FIND A TSW SUPPORTIVE MEDICAL PROVIDER

ITSAN maintains a member recommended TSW Syndrome supportive doctor list (see below).

IMPORTANT: Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as “supportive” by members of the ITSAN community. This usually means supporting your wishes to use a ‘no steroid’ approach; they are not necessarily likely to be familiar with TSWS (Topical Steroid Withdrawal Syndrome). Please consider confirming their perspective on TSWS before booking an appointment.

MEDICAL RESOURCES TO SHARE WITH DOCTORS

Be prepared to educate others. There are medical providers, friends and family who will be open to learning more about TSW Syndrome and who will become part of your loved one’s widening circle of support and care.

Below are resources on TSW Syndrome that may be helpful for TSW sufferers to share with their doctor:

FIND A SUPPORTIVE COUNSELOR

TSW affects the mental health of everyone in the family and accessing therapy in person or through telemedicine can provide support and relief.

Find mental health professionals in the U.S. (including those who offer telemedicine) here.

If outside the U.S. please reach out to find a mental health provider near you. Find one worldwide option here.

Please note: these resources are not vetted by ITSAN and ITSAN claims no affiliation.

ITSAN FACEBOOK SUPPORT GROUP

ITSAN’s private Facebook Support group has 14k members and provides resources, awareness and sharing of experiences.

ITSAN does not diagnose or recommend treatment or medication. ITSAN encourages TSW sufferers to work with a supportive medical provider. TSW Syndrome can be overwhelming and isolating. Connect with ITSAN’s Facebook Support group here.

SUPPORT GROUPS FOR PARTNERS

TSW Partner Support – “A place for the partners of those suffering from TSW. Safe place to ask questions, talk about your frustrations, share experiences and just find and share support.”

Join here.

Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

TSW Significant Other Support Group

Join here.

Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

GLOBAL TSW SUPPORT GROUPS

TSW warriors and caregivers are represented and engaged in sharing experiences in many support groups worldwide. Find TSW support groups below.

Please note: these resources are not vetted by ITSAN and ITSAN claims no affiliation.

Click here for: TSW Online Support Groups Listed By Topic

ONLINE TSW SUPPORT GROUPS LISTED BY TOPIC

FOR TSW WARRIORS:

ITSAN Topical Steroid Withdrawal Syndrome Private Facebook Support Group – learn more here.

Please note: the following resources are not vetted by ITSAN and ITSAN claims no affiliation.

Topical Steroid Withdrawal – Red Skin Support Group -“This page was created to give support to people who are going through Topical Steroid Withdrawal.” Learn more here.

Healing Happens / Topical Steroid Withdrawal / RSS Success Stories – “This group is for Topical Steroid Withdrawal & Red Skin Syndrome (TSW/RSS) Success Stories only and was created to spread awareness and hope through our personal stories.” Learn more here.

Long Term TSW Warriors – “This is a group for TSW sufferers who have been fighting their conditions for around 3 years or more. This is not a hard and fast rule but please respect it to the degree that you find appropriate.” Learn more here.

Eczema and Topical Steroid Addiction Awareness Group – “This group aims to be an informational rich discussion group, catering to people with both eczema and topical steroid addiction.” Learn more here.

Support group for NMT – TSW  – “For people going through TSW who have decided to adopt the NMT (No Moisture Treatment) approach as advocated by Dr Sato.” Learn more here.

Eczema Evolution & Topical Steroid Withdrawal – “This group is not just for those with eczema and TSW but for those who have been on a healing journey and have found and are finding evolution, transformation and love of self through their journey. Share your wisdom and insights since we are all learning from one another and ourselves.” Learn more here.

Healing Topical Steroid Withdrawal/RSS with Scientific Approach – “I have created this Topical Steroid Withdrawal/ Red Skin Syndrome group with the mission to fill a niche and information gap regarding this vicious and widely unknown and misunderstood condition. Learn more here.

FOR WOMEN:

Eczema & Topical Steroid Withdrawal for WOMEN – Healing Through Positivity“This is a loving support group for anyone suffering from eczema and/or Topical Steroid Withdrawal!” Learn more here.

 

FOR MEN: 

Steroid induced dermal atrophy and TSW (male group)“For men suffering from the long term effects of Topical Steroids Withdrawal and the dermal atrophy induced by topical steroids. This is for all men who have used this on intimate areas of skin who need a safe place to discuss this condition and to find support with other sufferers.” Learn more here.

 

FOR PARENT CAREGIVERS:

TSA Caregivers Rock! – “TSA is hard on everyone and everyone needs a safe place to complain and get support!!! Feel free and rock on caregivers!” Learn more here.

FOR CAREGIVER PARTNERS

TSW Partner Support – “A place for the partners of those suffering from TSW. Safe place to ask questions, talk about your frustrations, share experiences and just find and share support.” Learn more here.

TSW Significant Other Support Group – learn more here. 

Know of other TSW support groups? Please email us at: info@itsan.org  

Click here for: TSW Online Support Groups Listed By Location

ONLINE TSW SUPPORT GROUPS LISTED BY LOCATION

Please note: these resources are not vetted by ITSAN and ITSAN claims no affiliation.

AUSTRALIA:

Topical Steroid Withdrawal Australia Group – “We are a group of Aussies going through Topical Steroid Withdrawal and we are about supporting each other and providing encouragement and advice throughout the withdrawal process. Our aim is for complete healing without the use of steroids. We stand with you.” Learn more here.

CANADA:

Canada TSW Network – “A community for Canadians going through TSW.” Learn more here.

FRANCE:

NMT France – eczema RSS TSW addiction aux corticoides cortisone – “Groupe de soutient au malades du red skin syndrome, RSS, TSW en français. à force d’utiliser des corticoides pour l’eczema le malade tombe en RSS. le NMT permet de guérir en 3 mois du RSS mais pas de l’eczema (mais vous aurez à nouveau une peau presque normale!) et ce, sans rien acheter.” En savoir plus ici.

HUNGARY:

TSW Hungary TSW, TSA, RSS – Szteroidelvonás, Szteroidfüggőség, Vörös bőr szindróma – “A csoport azoknak készült, akik TSW-n (Topical Steroid Withdrawal), vagyis szteroidfüggőségen/elvonáson mennek keresztül. Nem vagyunk orvosok, csak azokat a tapasztalatokat osztjuk meg, amik nekünk beváltak, mindenki a saját döntése szerint alkalmazza ezeket.” További információ itt.

PHILIPPINES:

SUPPORT GRP Topical Steroid Withdrawal-TSWRSS Red Skin Syndrome Philippines – “This is a non-profit support group of Filipinos Suffering from Topical steroid withdrawal or also known as Red Skin Syndrome. Aims to educate, support Filipinos that are victims of topical steroid misuse or dependence.” Learn more here.

UK:

TSW London Network – “A group for people in London going through Topical Steroid Withdrawal.” Learn more here.

UK – Topical Steroid Withdrawal (TSW) – Group – “Topical steroid withdrawal and red skin syndrome UK support group. I have created this group to share info on the fight against topical steroid addiction, topical steroid withdrawal and red skin syndrome specifically for UK sufferers & their family/friends.” Learn more here.

US:

California TSW Network – “A community for Californians going through TSW.” Learn more here.

Know of other TSW support groups? Please email us at: info@itsan.org   

FIND WHAT WORKS FOR YOU

ITSAN provides tips on coping with TSW including what to expect, dealing with the itch and a TSW survival guide. Click here to learn more.

Every medication brings the risk of side effects and patients should take those into consideration. ITSAN does not recommend treatment, coping tips on ITSAN’s website have been recommended by members of the TSW community.

Your physical and mental health needs during TSW may change over time and may not be the same as another’s needs during TSW. Trust your instincts and seek the support, respect and individualized care you deserve.

TSW ASSIST – COPING TIPS

TSW Assist provides crowdsourced recommendations for managing Topical Steroid Withdrawal, provided by the community for the community.

TSW Assist does not provide medical advice and recognizes that every healing journey is different. Learn more here. Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

ITSAN VIDEO PODCAST

ITSAN talks with TSW sufferers, caregivers and medical providers to expand TSW awareness and support. 

In “ITSAN talks with Dr. Julie Greenberg about Eczema and Topical Steroid Withdrawal (TSW)” Dr. Greenberg explains how the use of topical corticosteroids are systemically absorbed, how the body’s addiction to cortisol takes place and side effects that may occur. She talks about how a leaky gut or leaky skin can drive the process of inflammation, ways to support healing from within and the difference between treating eczema and TSW. View here.

ITSAN YOUTUBE CHANNEL

Find resources and information including The ITSAN Video Podcast, ITSAN’s Spark Conference and encouragement from TSW sufferers, caregivers and medical providers.

Click here to view ITSAN’s YouTube Channel.

LEARN HOW ITSAN IS FIGHTING TO END TSW.

ITSAN President Kathryn Tullos, RN joins Dr. Raja Sivamani and Dr. Hadar Lev-Tov, board certified dermatologists on the Learn Skin podcast.

Kathryn talks about ITSAN’s advocacy work including meeting with the FDA to request labeling changes on topical steroids and a Drug Safety Meeting. She discusses how ITSAN works to provide research and resources for patients and medical providers on ITSAN’s website ITSAN.org and ITSAN’s work developing a patient registry to document TSW prevalence,

Kathryn shares how her call to advocate for the TSW community originated from her wish for others to have the support she needed as a TSW caregiver, including access to an accurate diagnosis for her son and safer topical steroid prescribing guidelines. She discusses her son’s TSW Syndrome experience and recovery, and how it is possible to dutifully comply with topical steroid treatment and still experience this iatrogenic condition.

Listen here.

GLOBAL TSW RESOURCES

SCRATCH THAT UK

Scratch That UK, a community and awareness campaign for Topical Steroid Withdrawal Syndrome rallied TSW sufferers in the UK to report adverse effects of topical steroids to the Medicines and Healthcare products Regulatory Agency (MHRA). In 2021, the MHRA recognized TSW in a Drug Safety Update. “Product information for topical corticosteroids is being updated to include safety warnings on withdrawal reactions. We have developed a patient safety leaflet to support patients and health care professionals, which includes advice on how to reduce the risk of severe reactions.” -MHRA   Learn more here.

Click here to learn about Scratch That UK.

 Click here for mental health tips from Scratch That UK (scroll down for tips).

Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

THE TSW PODCAST

“Topical Steroid Withdrawal success stories, expert advice and community support. Disclaimer: Please note the advice given within the podcast does not constitute individual medical advice, and it is important you discuss your personal situation with a qualified medical practioner.”

Listen here.

Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

TSW_WITNESSES

“Sharing pictures of topical steroid withdrawal witnesses from all over the world to raise awareness!”

Connect on Instagram here.
Connect on Twitter here. 

Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

THE TSW DATABASE

The TSW Database, a resource for all things TSW was developed by Cara Ward, writer and TSW survivor. The TSW Database includes:

Blogs & Websites, Youtube & Facebook accounts, TikTok & Instagram accounts, and more. Learn more here. 

Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.

TSW SUPPORT – VOICES FROM THE COMMUNITY

“Loss + Trauma Associated with Topical Steroid Withdrawal” – The Healthy Skin Show Podcast by Skinterrupt – Episode 162

Topical Steroid Withdrawal (TSW) can cause chaos in the body. But it can also begin to affect one’s emotional health, as well as their relationships.” -Jennifer Fugo, MS, CNS, host of “The Healthy Skin Show” Podcast By Skinterrupt.”

“I think that we really underestimate the emotional toll that it takes on relationships during and after recovery…I think another misconception is when you’re better, then everything goes back to normal and everything goes back to the way it was. And everything has shifted. Everything is different now. It’s a totally new normal.” -Kathryn Tullos, ITSAN President

Listen here.

Mental Health During TSW: Professor Angela Tiru, MA presented at ITSAN’s Spark Virtual Patient Conference and shared her expertise on medical gaslighting, trauma, PTSD and coping strategies related to the TSW experience.

Listen here.

“What is Topical Steroid Withdrawal?” – The Healthy Skin Show Podcast by Skinterrupt – Episode 132

“Many steroid (topical, oral, etc.) users are not given clear guidelines for how to safely use their steroid. This can lead to a condition called Topical Steroid Withdrawal Syndrome (TSW), which can severely impact the skin and overall health.

My guest today, Kathryn Tullos is a Registered Nurse from Houston, Texas with a degree in Communications. She is a wife and mom of 4 kids – ages 14, 12, 10, and 9. In mid-2013, her son suffered severely from Topical Steroid Withdrawal Syndrome (TSW) for 18 months, due to steroid creams prescribed for his eczema. Kathryn threw herself into patient advocacy to try to help others navigate this often misunderstood iatrogenic disease. She joined the ITSAN board in 2015, helped write and relaunch the ITSAN website, and eventually became Executive Director.” -Jennifer Fugo, MS, CNS, host of “The Healthy Skin Show” Podcast By Skinterrupt.”

Listen here.

TSW Warriors and Caregivers: In 2019 with the approaching 2 year anniversary of “Preventable: Protecting Our Largest Organ” Briana Banos, Director of Preventable caught up with the stars of her film and launched a special YouTube series called, “Where Are They Now?” In these reunion videos TSW warriors and caregivers featured in Preventable share how their lives have changed over the past two years.

View “Where Are They Now? with Ashley” here.

TSW Checklist

If you answer yes to many or all of these questions, we encourage you to explore ITSAN.org and discuss TSW with your doctor. Click here for the informational ITSAN Brochure to print out and share with your physician and others who need information about this disease.

  • Were you diagnosed with eczema or some form of dermatitis?

  • Did you begin to treat your rash with an over-the-counter (OTC) or “weak” topical corticosteroid?

  • When you stop the creams, or take breaks, does your rash return, turn red, burn, or even start to spread?

  • Did your physician write you stronger & stronger prescriptions? Did those stop being effective as well?

  • Did the eczema then begin to spread, get worse, and become chronic?

  • Do you now have erythema (redness) occurring in small or large areas of the body?

  • Is your redness accompanied by a burning sensation?

  • Do you think you are photo­sensitive or allergic to the sun?

  • Have you been patch-tested for skin allergies or contact dermatitis?

  • Were the patch test results inconclusive as to what is causing the rash?

  • Did you have a skin biopsy returned as “non­-specific spongiotic dermatitis”?

  • Have you avoided everything that could be an allergen, such as cosmetics, chemicals, sun, clothing, bedding, and a large array of suspected allergens?

  • Have you tried elimination diets and various alternative treatments, but nothing helped?

  • Have you bought expensive air filters, water purifiers, and other hypo­-allergenic products?

  • Have you ripped out carpet, torn down curtains, and gotten rid of potentially offending fabrics?

  • Is the condition of your skin still the worst it’s ever been?

KEEP UP WITH ITSAN

“One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.”   

-Brene Brown

“My top tip is go into therapy and know that you will need it. I think from the very beginning, if you’re in a couple, couples therapy. Get therapy even for your child if they’re going through this, or for yourself…expect that this would be kind of a traumatizing journey you’ll have to work through and please get help.”

-Kathryn Tullos, ITSAN President/CEO

ITSAN Brochure

Download this ITSAN brochure to learn more about TSWS.

Important Tips for TSW Friends and Family

Have you ever searched for an easy way to explain TSW to your friends and family members? 

Here is an easy print-out that can help.

Videos

Find videos on the TSW experience from documentaries to patient conferences.

Please note: ITSAN does not diagnose or recommend treatment or medication. ITSAN does not share the views expressed by individuals in these videos. ITSAN recommends that individuals going through TSW work with a supportive medical provider. 

“Skin on Fire” Panel Discussion – May 2022

ITSAN Video Podcast with Briana Banos: “Topical Steroid Withdrawal (TSW) and Mental Health” – Apr 2022

“TSW 1 Year Update – Best Advice for Dealing with TSW” – Mar 2022

“My Life During Topical Steroid Withdrawal” – Feb 2022

“Skin on Fire” Documentary – Jan 2022

“TSW Journey: A Topical Steroid Withdrawal Documentary” – Dec 2021

“SPARK – ITSAN Virtual Patient Conference” – May 2021

“An Overview of TSW (Topical Steroid Withdrawal)” – Oct 2020

Louise’s Painful Skin Condition – Save My Skin, TLC, Feb 2020

“More Than Skin Deep – Eczema Patient-Focused Drug Development Meeting with the FDA” – Sep 2019

“Preventable: Protecting Our Largest Organ” documentary – Mar 2019

A Current Affair covers TSW – Jan 2015

“Topical steroid addiction in atopic dermatitis” video abstract, Oct 2014

“Dangers of Topical Steroids – ITSAN” – Jul 2013

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