FOR PARENT CAREGIVERS

Caregivers of children going through TSW Syndrome have reported a set of challenges unheard of when it comes to most any other health condition. When horrific symptoms develop from a treatment that a parent believed was safe for their child, trust is broken. On this page find mental health support, member recommended TSW supportive doctors, medical resources to share with your child’s doctor, TSW support groups and more.

Trust your instincts to continue to support your child’s mental and physical health by identifying qualified medical providers. Trust that global awareness is growing about TSW Syndrome and you will reach a place of health and healing for your child by continuing to ask questions, to seek appropriate care and to tell your story. Please note: ITSAN does not diagnose or recommend treatment or medication.

FIND SUPPORT IF YOU ARE IN CRISIS

It is ok to need help and it is brave to speak up about what you are going through. TSW affects the entire family and everyone deserves support.

If you are in the U.S. and in crisis, call the Suicide and Crisis Lifeline at 1-800-273-TALK (8255), or call, text or chat 988.

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. You are not alone and you deserve to feel better. Please note: these resources are not vetted by ITSAN and ITSAN claims no affiliation.

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.

FIND A TSW SUPPORTIVE MEDICAL PROVIDER

ITSAN maintains a member recommended TSW Syndrome supportive doctor list located in the Files section of ITSAN’s Facebook support group. Join ITSAN’s Facebook group here.

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 TSW Syndrome. Please consider confirming their perspective on TSW Syndrome 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 child’s widening circle of support and care.

Below are resources on TSW Syndrome that may be helpful to share with your child’s doctor:

TSW SUPPORT GROUPS

ITSAN FACEBOOK SUPPORT GROUP

ITSAN’s private Facebook Support group has 19k 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. Join ITSAN’s Facebook Support group here.

PARENT CAREGIVER SUPPORT GROUP

“TSA is hard on everyone and everyone needs a safe place to complain and get support!!! Feel free and rock on caregivers!”

Join TSA Caregiver’s Rock! 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: not all resources are vetted by ITSAN.

ONLINE TSW SUPPORT GROUPS LISTED BY TOPIC:

FOR TSW WARRIORS:

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

  • 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.
  • TOPICAL STEROID WITHDRAWAL. GRUPO DE APOYO EN ESPAÑOL – Este grupo tiene el objetivo de compartir experiencias relacionadas con los síntomas provocados por el retiro de corticoides. No pretendemos diagnósticar ni tratar, no somos médicos, sólo compartimos nuestra experiencia. Aprende más aquí.
  • 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.
  • Using Oral Immunosuppressants in TSW Support Group – “This group was created to give support to those people who are going through Topical Steroid Withdrawal (TSW, TSA or RSS), coupled with the decision to manage their symptoms with oral or injected immunosuppressant medication. We support one another by sharing our stories, findings and pictures but acknowledge that none of this is intended as medical advice – simply shared common experiences.” Learn more here.
  • Treating TSW with dupixent – “This page was created, so we can discuss going through TSW and dupixent. It’s a rough road, but we are here to help each other through bad times and great times. Learn more here.

FOR WOMEN:

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.

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

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:

CZECH REPUBLIC & SLOVAKIA:

  • RED SKIN SYNDROME CZ/SK – “Zamerom skupiny je vytvorit siet ludi z Ciech a Slovenska, ktori trpia tymto vaznym a v nasich koncinach neznamym “ochorenim” , ktora bude pre clenov sluzit ako priestor na zdielanie informacii. Nakolko sa v nasich krajinach o Red skin syndrome velmi nevie a nehovori (ani medzi lekarmi), su ludia s RSS nuteni hladat potrebne informacie o diagnostike a moznostiach liecby v zahranicnych zdrojoch. Tie vsak nie vzdy zohladnuju podmienky nasich krajin. Verime, ze tato skupina pomoze aspon ciastocne vykompenzovat vyssie spominane nedostatky.” Viac sa dozviete tu.

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:

MALAYSIA:

PHILIPPINES:

SINGAPORE:

  • Singapore Topical Steroid Withdrawal / Red Skin Syndrome Support Group – “Support and encouragement for Singaporeans going through Red Skin Syndrome or Topical Steroid Withdrawal. We hope to create awareness about TSW/RSS and provide a safe space for fellow patients to be supported and encouraged. We also hope to empower eczema patients to make better decisions on their eczema treatment.” Learn more here.

SPAIN:

  • SÍNDROME DE PIEL ROJA POR USO DE CORTICOIDES-TSW ESPAÑA –“Grupo creado para encontrar el apoyo y la información que necesitamos para sanar de la enfermedad iatrogénica (TSW o Síndrome de Piel Roja)  causada por el uso de corticoides tópicos, ingeridos, inhalados, inyectados. Queremos también denunciar públicamente el horrible y equivocado uso que se hace de los corticoides para tratar problemas de piel, alargando y agravando el daño sin buscar el origen del problema. Queremos hacer saber a la comunidad médica y farmacéutica que no nos sentimos escuchad@s y, en la mayor parte de los casos, hemos recibido un mal-trato por parte de la clase médica. Apostamos por una vida vivida con salud sin ser fármacodependientes. La información nos empodera. Juntos somos más fuertes.” Aprende más aquí.

UNITED KINGDOM:

  • 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.
  • Bristol – Scratch That Bristol & South West – “A support network for those suffering from chronic eczema and/or Topical Steroid Withdrawal in and around Bristol.” Learn more here.

UNITED STATES:

  • California TSW Network – “A community for Californians going through TSW.” Learn more here.
  • Hawaii – Topical Steroid Withdrawal Hawaii – “Hawaii based, supportive and caring space for those suffering through Topical Steroid Withdrawal (TSW). Gathering place for those that want to raise awareness and affect positive change for the TSW community here at home.” Learn more here.

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

PARENT CAREGIVER SUPPORT

CAREGIVERS – APPROPRIATE CARE ROADMAP

Supporting and Protecting Your Family: Your Right to Access Appropriate Medical Care For Your Child During TSW Syndrome

“Find ways to feel more prepared and proactive when you are caring for your child’s intense health issues during TSW. There are supportive doctors who will listen and learn if they are not familiar with TSW Syndrome. Have hope and take time to take care of you.” -Jolene MacDonald, ITSAN Executive Assistant

Click here to read more.

TIPS FOR TSW PARENT CAREGIVERS

Be gentle on yourself. Every day your love, your strength and your instincts champion your child’s recovery. Returning to health and balance comes with continuing to identify what your child needs, including supportive medical providers, understanding school providers, family and friends who rise to the opportunity to learn about TSW Syndrome and to stand with you. Believe in your child’s potential to heal and believe in yourself. Taking care of you – their parent, their caregiver, their hero – supports physical and emotional healing for the entire family.

Click here to read more.

FINDING YOUR PATH – BACK TO SCHOOL FOR TSW WARRIORS

Wherever you are as back to school approaches this year, know that it is ok to be different as you identify your child’s strengths and advocate for their health and learning needs. Great educators are open to learning and taking on new challenges in order to expand their skills and understanding. Your child’s educational team is there to help support you in finding ways for your child to be successful in school.

Click here to read more.

COPING WITH TSW

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 – EDUCATIONAL RESOURCES

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.

ITSAN VIDEO PODCAST

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

In “Topical Steroid Withdrawal Healing Story” Jocelyn, a TSW caregiver, her nine-year-old son Ryker, and Natalie Lawton, ITSAN Executive Board member discuss Jocelyn initially wondering if her son could be building up a tolerance to the steroids that she was instructed to lather on his body every day by his physician. She explains that his rashes and eczema continued to worsen on the topical ointments, and they were only offered stronger steroids.

With the support of their pediatrician, they were able to stop the steroids and go through a withdrawal process that lasted almost three years. Jocelyn and Ryker explain how embracing the “flares as healing” helped them get through the toughest times during Topical Steroid Withdrawal. They both used their intuition to listen to what Ryker needed to heal and feel most comfortable during a very stressful and painful time. Thankfully, today Ryker is living his life with clear skin and no signs of eczema or TSW. View here.

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” with Professor Angela Tiru, MA 

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.

“Where Are They Now?” – Updates on the TSW Warriors and Caregivers from “Preventable: Protecting Our Largest Organ”

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

Select from the topics below to find more on this page:

ITSAN Brochure:

For Your Doctor

Download this ITSAN brochure on TSWS to share with your child’s doctor.

DOWNLOAD PDF

ITSAN Brochure

Download this ITSAN brochure to learn more about TSWS.

DOWNLOAD PDF

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.

DOWNLOAD PDF
“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

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

ITSAN Webinar – “A Caregiver’s Experience with TSW” – Nov 2021

“SPARK – ITSAN Virtual Patient Conference” – May 2021

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

“Whitestown woman pushes to bring awareness to Topical Steroid Withdrawal” – WISH-TV, Jul 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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