ITSAN - Topical Steroid Withdrawal Syndrome Support

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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.

11/19/2025

Even today, most doctors refuse to acknowledge TSW. Over 80% of patients are dismissed, told their symptoms aren’t real, or misdiagnosed entirely. This disbelief leaves people isolated and suffering without support.

The medical system is failing the very patients it’s supposed to help – ignoring the truth and turning a blind eye. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. They need every one of us to join in.

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!

Join the fight: https://actionhub.itsan.org/

11/18/2025

A big ITSAN welcome to our new "Healthy Skin Club" partner, Eczema Clothing!

Eczema Clothing offers thoughtfully designed garments for adults and children navigating TSW, eczema, and sensitive skin. Made from soft, breathable organic cotton with features like flat seams, no labels, and integral mittens, our clothing is made to be gentle on skin. Founded by a parent with lived experience of severe eczema, we understand how challenging skin journeys can be.

Interested in becoming a Partner of ITSAN: Please visit: https://actionhub.itsan.org/partner/

11/17/2025

has exploded on TikTok, with over 2 billion views and thousands of people sharing the same painful reality. It’s not a coincidence.

This is a Global Health Crisis hiding in plain sight – and the lived experience of millions is being dismissed as “anecdotal” or “misinformation.” Meanwhile, people continue to suffer without answers, without support, and without acknowledgment from the very system meant to protect them.

The truth is out there – louder than ever. But the medical establishment still refuses to take action. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. They need every one of us to join in.

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!

Join the fight: https://actionhub.itsan.org/

11/14/2025

For too long, people prescribed topical steroids have been left in the dark about the serious risks of Topical Steroid Withdrawal. Without clear warnings or informed consent, countless patients have suffered needlessly. This isn’t just negligence – it’s a violation of trust.

Informed consent isn’t optional. It’s a fundamental right. Patients deserve to know the truth before starting treatment – so they can make decisions about their health without hidden dangers.

The medical establishment’s silence has caused unnecessary harm. But together, we can change that. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. We need everyone in our community to join in.

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!

Join the movement today at: https://actionhub.itsan.org/

11/12/2025

For decades, people have been sounding the alarm. Medical journals first documented TSW in the 1970s – yet most doctors still deny it exists. No warnings. No accountability. Just more harm.

The truth has been out there for over 50 years, yet hardly anything is being done to prevent TSW. That’s not a mistake – it’s a systemic failure.

Diplomacy alone isn’t working. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. They need every one of us to join in.

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: https://actionhub.itsan.org/

11/10/2025

If your life has been shattered by TSW, or if you’ve watched someone you love suffer through it, we see you. We know your pain, your frustration, and your fight to be heard.

That’s why we’ve created the TSW Action Hub – a platform where our shared experiences can fuel a movement for recognition, justice, and healing.

Inside the Hub, you can:
• Raise awareness and share the truth about TSW
• Educate doctors and push for validation
• Hold the medical establishment accountable
• Support proper research into TSW and treatments
• Help others walking this same difficult road
• Be part of a movement that refuses to stay silent

Together, we can turn suffering into change – and ensure this preventable, man-made crisis is never ignored again.

Click below to hear a very special message from Kelly Barta, and a rallying cry from some very brave people in the TSW community. Together they offer a poignant reminder of what TSW takes from our lives, and why it’s so important that everyone affected rises as one to turn the tide against this awful condition.

https://actionhub.itsan.org/rise-up/

10/23/2025

Today we celebrate ITSAN co-founder, Dr. Marvin Rapaport's, birthday along with honoring him with a much deserved award, recognizing his contributions in RSS/TSW awareness, treatment and prevention.

For decades, Dr. Rapaport has been a voice in dermatology speaking up about the dangers of long-term topical steroid use, and whose pioneering research on Red Skin Syndrome has changed the way doctors and patients around the world think about these medications.

Even though his discoveries have been met with resistance over the years, due to his deep commitment to patients and to the truth, his work has given thousands of people hope and a path to healing when no one else would listen.

Dr. Rapaport has not only saved lives, but his discoveries and work have been the catalyst to reshape an entire field of medicine. ITSAN honors him not just as a doctor, but as a true pioneer and advocate for patients. The "Marvin J. Rapaport Award of Distinction" will live in perpetuity, honoring Dr. Rapaport's legacy, and will be given annually by ITSAN to a researcher who has helped push forward TSW awareness and provided a better understanding of TSW and its treatment.

Please join us in honoring Dr. Marvin Rapaport—a doctor, a hero, and a man who’s made a world of difference.

*If you'd like to learn more about Dr. Rapaport's legacy and how he helped shape the TSW movement, check out the recently released book, "False Cure," by ITSAN's co-founder, Kelly Palace. You can find the book on Amazon.

10/23/2025

Such a great time gathering with the Aussie TSW Community in Melbourne tonight. We had a super turnout of 50 people! Yummy food, great conversation, encouragement from those who have healed from TSW and inspiration to become part of needed change for those coming along behind us. We’re so grateful for the sponsorship from our awesome partners: , and .au whose generous support allowed us to provide this night as a gift, and for the samples that these companies provided in addition to and . ❤️

10/13/2025

ITSAN has submitted an ICD-10 code proposal to the CDC for TSW, which is currently under review. We need your help to get it over the finish line!

A TSW specific diagnostic code would enable clear reporting, tracking of prevalence, promoting needed research and providing better insurance coverage and support for patients.

It's critical that our community shows up to let the CDC know how critical this approval is in helping end TSW and support suffering individuals. Once this code is approved in the US, it will be lot easier to get added to the WHO's ICD-11 code list, which will benefit our global community.

Will you help by sending a letter of support? We have made the process very easy. All you need to do is insert your personal story within the draft template we have created, which can be accessed here:

https://docs.google.com/document/d/15Jewih1-Qeec3v9nawqZfOQUt1WzPXoy/edit?usp=drive_link&ouid=111255227102524254126&rtpof=true&sd=true

Once you’ve edited the letter, you will need to email it to the address included within the body of the template. Letters will be accepted until Nov. 10th.

If you are interested in viewing the TSW code proposal, you can find it on page 158 of the ICD-10 Coordination and Maintenance Committee September, 2025, Meeting here:

https://www.cdc.gov/.../icd/September-2025-Topic-Packet.pdf

10/02/2025

Last month, the CDC reviewed our TSW diagnostic code proposal for implementation within the US health system. A TSW specific diagnostic code would enable clear reporting, tracking of prevalence, promoting needed research and providing better insurance coverage and support for patients.

Due to the ongoing controversy around the condition within the medical establishment, this was the 3rd review we've had in the past 1 1/2 yrs with the CDC’s review board. In fact, after its presentation this past time, representatives from the American Academy of Pediatrics openly opposed its addition before the board.

It's critical that our community shows up to let the CDC know how critical this approval is in helping end TSW and support suffering individuals. Once this code is approved in the US, it will be lot easier to get added to the WHO's ICD-11 code list, which will benefit our global community.

Will you help get this across the finish line by sending a letter of support? We have made the process very easy. All you need to do is insert your personal story within the draft template we have created, which can be accessed here:

https://docs.google.com/document/d/15Jewih1-Qeec3v9nawqZfOQUt1WzPXoy/edit?usp=drive_link&ouid=111255227102524254126&rtpof=true&sd=true

Once you’ve edited the letter, you will need to email it to the address included within the body of the template. Letters will be accepted until Nov. 10th.

If you are interested in viewing the TSW code proposal, you can find it on page 158 of the ICD-10 Coordination and Maintenance Committee September, 2025, Meeting here:

https://www.cdc.gov/nchs/data/icd/September-2025-Topic-Packet.pdf

09/23/2025

Hey Aussie Friends: ITSAN is organizing a TSW meet up in Melbourne the evening of October 22 and we hope you'll come join us!!

This is a free event (no cover charge), held at Ms Parker at the Motley Hotel, Richmond. Finger Foods and Drinks will be provided, starting at 6:30 pm. In addition to connecting on all things TSW, Kelly Barta will be sharing the inside scoop of the movement in the US and looks forward to hearing from you how ITSAN can best support your efforts in Australia. We have several local healthy skin product companies who will be joining and sharing some samples for us as a bonus!

Please pre-register using the link below by October 11 so we can reserve appropriate space.

https://www.eventbrite.com/e/tsw-meet-up-tickets-1735961931869?aff=oddtdtcreato

09/12/2025

Join us this Saturday for an interactive session where we will learn about the connection between stress and inflammatory skin conditions, along with some simple ways to help calm your body and promote healing.

Virtual Event takes place: September 13th at 11 am PST - 2 pm EST - 7 pm GMT.

No need to put your camera on if you'd rather not - just come as you are!

Register at the link below:

http://bit.ly/4g6Ocrx

Living with eczema or topical steroid withdrawal can feel overwhelming, especially when you feel like you’ve tried everything and nothing works. This isn’t another lecture about creams or prescriptions. It’s an interactive session where you’ll discover how stress and emotions fuel flare-ups and, more importantly, how to gently calm your body and mind so your skin can catch its breath. Together, we’ll explore simple practices you can use anytime, anywhere to ease the chaos, reclaim moments of relief, and feel less alone in the struggle. You’ll leave not just informed, but supported, with practical tools and renewed hope.

Our facilitator, Dr. Keira Barr, is a dual board-certified dermatologist, certified somatic trauma therapy and stress release practitioner, and the founder of the Center for Mind Skin Medicine.

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