Advocating, educating, raising awareness, and providing support for a global community living with Eczema and Topical Steroid Withdrawal Syndrome
At the International Topical Steroid Awareness Network we believe you have the right to an accurate diagnosis, informed consent, diverse treatment options, and support from the medical community. Whether you are dealing with eczema or other skin conditions, learning about the risks, benefits, and alternatives to topical steroids can help with prevention and early detection of Topical Steroid Withdrawal (TSW) Syndrome.
Introduction to Topical Steroid Withdrawal Syndrome
Video: Overview of TSW
Dr. Heba Khaled (BDS BSc (Hons)) authored this atlas from a medical and patient perspective explaining how TSW develops, presents, and resolves. Dr. Khaled is a dentist from a medical family, but her understanding of TSW is personal – she is an ITSAN member who began her own withdrawal in 2017.
Explore ways to care for TSW
ITSAN is here to help. You are not alone.
Topical Steroid Withdrawal Syndrome can be overwhelming and isolating. Find community and encouragement by joining our ITSAN support group.
Your fellow ITSAN members share tips and comfort measures so you don’t have to go it alone.
We have many resources to help you navigate your steroid withdrawal journey.
What our members are saying
“In 2014 I was desperate to understand why my 4 year old son was experiencing worsening eczema. He was prescribed more topical steroid creams and his skin kept getting worse. I found ITSAN online and the pictures of others experiencing terrible withdrawal symptoms to topical steroid creams was my A-ha moment. ITSAN was there for the darkest, hardest time of my life with information and support. My healthy 10 year old child is out scootering with friends as I write these words. Thank you ITSAN” – Jolene MacDonald, USA
“ITSAN is an encyclopedia of information on TSW and treatment options for eczema. My granddaughter was diagnosed with eczema when she was 3 days old and was prescribed topical steroids. It worked well in the beginning but after being prescribed steroids for over 3 years we were seeing many side effects from compromised immunity to stunted growth, anxiety issues to many more. Me and my family are thankful that ITSAN helped us with timely information and support to help my granddaughter’s TSW get better. She is now a healthy child living life with full enthusiasm” – Revathi Krishnan, Mumbai – India
“This organization helped me through the most challenging, darkest hours of my life. I don’t know how I would have made it through the healing process without the support of the founders and members, as well as the resources this network provides.” – Lorry, USA
“I felt alone battling my condition without the right support and information. If not for ITSAN I could not have survived my severe eczema which later turned into TSW. ITSAN’s support group provided valuable information in understanding my treatment options, connecting with survivors of TSW and helped me through the painful process of TSW.
” – Vini Periera , Australia
Preventable: Protecting our Body’s Largest Organ
Documentary by ITSAN member Briana Banos explaining the causes of TSW Syndrome, exploring treatment options, and exposing the lived experience of the TSW Syndrome sufferer.
Delivering Lasting Impact
The International Topical Steroid Awareness Network (ITSAN), was formed in 2012 to raise awareness about Topical Steroid Withdrawal Syndrome, also known as Topical Steroid Addiction or Red Skin Syndrome. ITSAN is a diverse community of individuals, medical professionals, and caregivers united by our commitment to prevent TSW Syndrome and to alleviate the suffering of anyone facing this painful experience.
Collaborating with other organizations:
“More than Skin Deep” Voice of the Patient Report
The International Topical Steroid Awareness Network, along with four other nonprofits, is excited to launch the “More than Skin Deep” Voice of the Patient report! This report includes the lived experience of eczema, drawn from data and testimony shared at the 1st patient-focused drug development (PFDD) meeting for eczema. Check out this report and learn from hundreds patient and caregiver experts who shared their perspectives at the meeting, on the webcast, and via the survey. Host organizations, including our own Kelly Barta and Kathryn Tullos, and sponsor companies share how they’ll use the learnings from the More Than Skin Deep initiative to better meet the community’s needs. Download the report at bit.ly/eczema-report.
Physician Statements
“I have certainly seen Topical Steroid Withdrawal Syndrome, now multiple times. Generally, I find that these patients tend to have more widespread involvement on their body, but almost always have face and neck involved. Unlike eczema, it tends to be more red and flushing or blushing in appearance, although many patients will also have eczematous and scaly lesions at the same time.”
“Steroid addiction is a more subtle and more insidious type of side reaction. It is common but is not high in medical consciousness because it frequently goes unrecognized. Hence, it is underreported and not well characterized. Because it develops in stages, often slowly, both the physician and the patient may fail to incriminate the steroid.”
“Though the topic of topical steroid addiction (TSA) is troublesome for physicians, we should not postpone facing it. It is not a temporary tide, TSA is real. Please search articles in PubMed. At the minimum, warning of TSA as a side-effect of topical steroids must be added in the guidelines of all areas of atopic dermatitis treatment.”
“By being aware of TCS addiction and withdrawal, practitioners may be better able to help prevent this adverse effect and offer supportive care to patients in TCS withdrawal. It would also be useful for GPs to be able to discuss TCS addiction and withdrawal with patients who seek to clarify information they glean from non-medical sources.”
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85% of our total operating expenses fund: raising awareness, providing information, extending support, and partnering with governing and medical entities for advocacy and research to bring regulatory changes.
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