ITSAN - Topical Steroid Withdrawal Syndrome Support

ITSAN - Topical Steroid Withdrawal Syndrome Support This is the official public page for the International Topical Steroid Awareness Network. Please find a supportive doctor for that purpose.

The ITSAN page offers information and inspiration about Topical Steroid Withdrawal Syndrome, but does not answer specific questions or medically advise. Please join our official ITSAN Facebook support group in the link below for discussion and support from other members:

https://www.facebook.com/groups/ITSANSupport/

Neither ITSAN nor its support group members are permitted to give medical advice or diagnose.

Wishing our wonderful community a very Merry Christmas! May your home and heart be filled with the warmth and light of ...
12/25/2025

Wishing our wonderful community a very Merry Christmas!
May your home and heart be filled with the warmth and light of this season ❤

ITSAN is truly grateful for the support of our sponsors who help enable the work we do to raise awareness of TSW and sup...
12/20/2025

ITSAN is truly grateful for the support of our sponsors who help enable the work we do to raise awareness of TSW and support affected individuals and their families.

We celebrate these companies creating clean and healthy products for sensitive skin!

In February 2021, Rose-Anna woke up with a different body and a new face – she was starting her TSW journey.TSW is a phe...
12/19/2025

In February 2021, Rose-Anna woke up with a different body and a new face – she was starting her TSW journey.

TSW is a phenomenon that has captured the attention of millions online but rarely appears in the mainstream media. Thanks to Rose-Anna's determination to raise awareness, she produced "Two Faced" – an audio production about TSW, created for BBC Sounds. The work aims to give a voice to the TSW community and authentically represent our experiences.

What actually is TSW, why is it controversial and how does it affect people? Rose-Anna and her circle of fellow TSW Warriors describe what it’s like to live with multiple faces and why this online community can sometimes be a double edged sword.

Please note, this audio production is presently only available to people in UK.

https://www.bbc.co.uk/sounds/play/m002njg6?origin=share-mobile&partner=uk.co.bbc

12/16/2025

You lived it. Now let’s prove it.

Every person who joins our TSW registry strengthens the evidence.
This is how we get doctors, researchers, and regulators to listen.
This is how we prove TSW is real – and demand better.

What exactly is a Patient Registry? Glad you asked! In general, a patient registry is a collection of standardized information about a group of patients who share a common condition. The TSW patient registry will help us build a profile of TSW and conduct studies; giving the medical community a better understanding of the syndrome to more effectively support TSW patients.

By participating in the TSW Registry, you are helping fuel the research process. The more who join, the faster we get to the truth.

Will you add your voice to ours?

Click here to learn more and register: https://tsw.iamrare.org/

THIS IS HUGE!!! After over 2 years in the making, the world finally has expert consensus derived diagnostic criteria for...
12/12/2025

THIS IS HUGE!!! After over 2 years in the making, the world finally has expert consensus derived diagnostic criteria for TSW to provide doctors and patients alike.

An enormous thank you Dr. Peter Lio, Olivia Hsu Friedman, and others for leading this challenge and persevering through obstacles to make the skin world a safer and healthier place.

https://doi.org/10.1093/bjd/ljaf518​

The only way to solve TSW... is with you.All of us in the TSW community have felt the consequences of the lack of awaren...
12/12/2025

The only way to solve TSW... is with you.

All of us in the TSW community have felt the consequences of the lack of awareness and understanding around TSW in the medical system. To change this, we need research. Plain and simple.

Sadly, due to the controversy around in the condition within the medical community, research in this arena has been a low priority. That changes now, with us.

We can build the data that can’t be ignored. Your experience holds the clues the world needs – and together, we can make a change.

ITSAN's TSW Patient Registry is the way to show what happened to you, how many people TSW is actually affecting around the world, and to provide clues into the condition and its potential treatments.

By participating, you are helping fuel the research process. The more who join, the faster we get to the truth.

Will you add your voice to ours?

Click here to learn more and register: https://tsw.iamrare.org/

For years, TSW has been misunderstood, misdiagnosed and ignored. But, all of that is set to change.Today is the long-awa...
12/10/2025

For years, TSW has been misunderstood, misdiagnosed and ignored. But, all of that is set to change.

Today is the long-awaited launch of ITSAN’s global TSW registry! This is the research our community (YOU!) have been asking for. It’s the way to show what happened to you, how many people TSW is actually affecting around the world, and to provide clues into the condition and its potential treatments.

What exactly is a Patient Registry? Glad you asked! In general, a patient registry is a collection of standardized information about a group of patients who share a common condition. The TSW patient registry will help us build a profile of TSW and conduct studies; giving the medical community a better understanding of the syndrome to more effectively support TSW patients.

By participating in the TSW Registry, you are helping fuel the research process. The more who join, the faster we get to the truth.

Will you add your voice to ours?

Click here to learn more and register: https://tsw.iamrare.org/

A huge shout out to Mary Kille for her incredible work in getting her home state of Connecticut to become the 8th state ...
12/08/2025

A huge shout out to Mary Kille for her incredible work in getting her home state of Connecticut to become the 8th state in the USA to recognize TSW!! THANK YOU, Mary, for jumping in to help make the skin world a safer place for all!

We are grateful to of Governor Ned Lamont for his leadership in placing a spotlight on the great need for more TSW research and supporting individuals and their families who have been deeply impacted by TSW.

Having TSW recognized on local and regional levels is a very important step to fixing the problem - not only does it provide credibility and help prioritize TSW in research agendas, but also provides desperately needed validation for families with children suffering with TSW, whose medical providers are non-supportive and threaten parents with Child Protective Services. Until TSW is universally recognized and clinical guidelines around these drugs are changed, this will continue to be a problem.

If you are interested in joining the movement to get TSW recognized in your state or country, visit the new TSW Action Hub (link below) to get started today! We've made the process super easy and it is so rewarding to know that you have helped solve the TSW problem in a VERY BIG way! (plus you get a cool piece of legislation that you were responsible for to hang up in a prominent place 🙂 )

Click here to get started: https://actionhub.itsan.org/advocate/

Topical steroids were only ever approved for short-term, non-continuous use. Yet millions of people are prescribed them ...
12/05/2025

Topical steroids were only ever approved for short-term, non-continuous use. Yet millions of people are prescribed them for years – even decades – to manage chronic skin conditions like eczema.

Most steroid labels advise using them for no more than two weeks. No max dose. No long-term safety data. No monitoring. And yet, the average adult with eczema has used them for over 15 years.

This isn't an oversight. This is systemic failure. The FDA approved them. The American Academy of Dermatology keeps silent. And no one seems to be watching what happens next.

No other prescription drug is handed out like this — with next to no monitoring of cumulative effects and zero long-term accountability. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change.

The TSW Action Hub is where we unite, raising our voices to speak the truth. Alone, we’re easy to dismiss. Together, we’re impossible to ignore!

Click the link to add your voice to ours: https://actionhub.itsan.org/

In addition to sharing a few of our own TSW tips in the video posted earlier today, we are thrilled to provide an extra ...
12/02/2025

In addition to sharing a few of our own TSW tips in the video posted earlier today, we are thrilled to provide an extra special a gift to you this Giving Tuesday: the recently published book, 'False Cure,' by ITSAN co-founder, Kelly Palace.

It's the story of the sparking of a global movement begun by a woman desperate for answers and the doctor who listened to his patients and dared to speak the truth.

Along with her skill in story-telling (that will keep you on the edge of your seat), Kelly's background in investigative journalism shines a light on why there has been such unrelenting resistance to address this growing worldwide crisis. Trust us, this book will light your fire and empower you beyond words!

Kelly has generously provided a free audio and e-book version of the book for our community. Click the link to get your copy today!: https://www.itsan.org/false-cure-promo/

12/02/2025

We had an idea: this Giving Tuesday we wanted to give something to YOU, our amazing TSW Community!!

As the small group of people behind the work of ITSAN, its Board of Directors, we know TSW is a hard, hard road. We've all been been there - each of us has been touched by this condition either as an individual or a caregiver for a child. In this video, we share our top tips to get through TSW. While everyone's experience is different, we hope some of these tools might spark some ideas of your own and help you along the way. While the biggest factors to healing from TSW are cessation of topical steroids and time, along with coping measures as we share here, some have also supported their journeys with a variety of medications. To find out more, check out ITSAN's website @ itsan.org

In addition to sharing a bit of our own journeys, we are thrilled to provide an extra special a gift to you: the recently published book, 'False Cure,' by ITSAN co-founder, Kelly Palace. It's the story of the sparking of a global movement begun by a woman desperate for answers and a doctor who listened to his patients and dared to speak the truth.

Along with her skill in story-telling (that will keep you on the edge of your seat), Kelly's background in investigative journalism shines a light on why there has been such unrelenting resistance to address this growing worldwide crisis. Trust us, this book will light your fire and empower you beyond words!

Kelly has generously provided a free audio and e-book version of the book for our community. Click the link to get your copy today!: https://www.itsan.org/false-cure-promo/

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