ITSAN is the only nonprofit in the world supporting, advocating, and educating about Topical Steroid Withdrawal Syndrome for a global community. ITSAN’s website was first launched in July 2009 by Kelly Palace as AddictedSkin.com based on her personal experience suffering from Topical Steroid Withdrawal Syndrome. The website featured medical articles on Topical Steroid Addiction and Withdrawal and provided an online support group for people experiencing TSWS. In January 2012 Palace changed AddictedSkin.com to ITSAN.org and filed for nonprofit status with Dr. Marvin Rapaport as co-founder.
ITSAN was granted 501(c)(3) nonprofit status in February 2012. Dr. Rapaport left ITSAN in June 2013 and Palace continued as ITSAN President until January 2015. Kathryn Tullos joined ITSAN’s Board in 2015 and became ITSAN’s President in October 2019. Tullos, a nurse and parent caregiver advocate, wanted to provide an informational resource that was not available when her son suffered through Topical Steroid Withdrawal. She helped write and relaunch the website in 2015.
The purpose of ITSAN’s website is to advocate, educate, raise awareness and provide support for individuals living with eczema and Topical Steroid Withdrawal Syndrome. ITSAN.org provides coping strategies, peer reviewed medical publications, patient stories, photos and ultimately a place to learn about the preventable, iatrogenic condition Topical Steroid Withdrawal Syndrome.
Finding Information – Landing Page
You may be a medical provider seeking more information about TSW Syndrome, or you may be a sufferer or caregiver to someone experiencing TSWS. We appreciate that you are seeking more information. When you arrive at the Landing Page you will find the option to pursue six topics featured in the white banner at the top of the page:
- What is TSWS? – provides information explaining Topical Steroid Withdrawal Syndrome and the acronyms RSS, TSA, TSW. Learn about common symptoms of TSW Syndrome before and after discontinuing topical steroid use, treatment options and recovery time period.
- Topical Steroids 101 – defines topical steroids, their use and how they work. This section provides factors influencing absorption of topical steroids, examples of classification by potency and side effects. Sidebars on this page provide more detailed information.
- Coping with TSWS – based on firsthand experience of thousands of TSW sufferers you will find, What to Expect, Dealing with the Itch and a Survival Guide.
- Resources – a selection of medical articles and peer reviewed research describing clinical presentation of Topical Steroid Addiction and Withdrawal. Sidebars on this page include ITSAN’s printable Brochure and TSW videos. There is also a link to connect and support ITSAN by shopping Amazon Smile.
- For Doctors – a resource for healthcare providers from TSW experienced doctors and researchers offering medical literature, including TSWS presentation and treatment. Images of children and adults who recovered from Topical Steroid Addiction and Withdrawal after ceasing use of topical steroids are included in this section.
- Stories and Photos – Many individuals who visit ITSAN.org consider this section their “Ah-ha” moment when they see images and read accounts of others who experienced TSWS. This section represents potentially millions of sufferers who were treated with increasingly potent topical steroids, and who developed symptoms of Topical Steroid Addiction and Topical Steroid Withdrawal upon cessation of topical steroids.
Connecting With Others – Social Media
Further up on the Landing Page is a blue banner with icons linked to ITSAN’s social media sites:
- Facebook – Find ITSAN – Topical Steroid Withdrawal Syndrome Support public page. Here you can click on “More” and then “Group” to join ITSAN Topical Steroid Withdrawal Syndrome Support Group – Private Group and connect with over 12K TSW sufferers and caregivers. ITSAN maintains a list of TSWS supportive doctors recommended by members. ITSAN’s list of TSWS supportive doctors is available under Files in the private group. ITSAN does not diagnose or recommend treatment or medication.
- Instagram – Find support, information, advocacy efforts, TSW warrior highlights and more!
- Twitter – Find TSW tips, research and news.
- YouTube – Find strategies for coping with the mental and physical toll of TSW, learn about ITSAN’s advocacy work and discover TSW related webinars.
Raising Awareness – More About ITSAN
You will find four additional sections in the top blue banner specific to News, the Board, Outreach and Fundraising:
- News – Catch up with ITSAN’s newsletter, explore the “More than Skin Deep” Voice of the Patient Report, link to the documentary “Preventable: Protecting Our Largest Organ,” and find ITSAN’s Year End Report.
- Blog – find TSW warrior highlights and resources for TSW patients and parent caregivers.
- About ITSAN – Meet our team! Read ITSAN’s mission, learn about our advocacy work and goals. Meet our Board of Directors and Medical Advisory Board.
- Contact Us – ITSAN receives inquiries from around the world, often from individuals experiencing terrible symptoms and seeking recommendations for TSW supportive doctors. Please reach out here for more information and resources.
- Donate – How you can help: ITSAN relies on a small budget to accomplish big goals and to work towards greater awareness, pivotal change and ultimately prevention. Thank you for your support!
- You can subscribe to ITSAN’s Newsletter by entering your email address within the black banner.
- Scroll down further on the Landing Page and discover ITSAN’s collaborations with other organizations.
- Watch “An Overview of TSW” a comprehensive video about TSW made by Dr. Heba Khaled, a dentist who went through TSW.
- Connect to ITSAN’s Facebook Support Group.
- Read member testimonials.
- Learn about ITSAN’s work raising awareness, extending support, providing information, supporting research and advocacy.
- Read physician statements about Topical Steroid Withdrawal Syndrome.
Explore Ways You Can Help
- Contribute your story – at the bottom of the Landing Page find a link to an opportunity to share your story and help fellow TSW warriors. Or email us directly at: firstname.lastname@example.org
- Donate – use the link to support ITSAN continue to collaborate with healthcare providers, legislators, patient organizations and suffering individuals.
Thank you for caring and supporting ITSAN.org