About ITSAN

The International Topical Steroid Addiction Network is a nonprofit charity formed to raise awareness about a condition called Red Skin Syndrome, also known as Topical Steroid Addiction or Topical Steroid Withdrawal Syndrome.

ITSAN Red Skin Syndrome Support has grown into a thriving world-wide online community where members share, comfort and encourage one another. ITSAN.org serves an International population as a resource for the individual, the caregiver, and the healthcare provider.

Mission

To raise awareness of Red Skin Syndrome and support affected individuals.

Goal

Prevention, early detection, accurate diagnosis, and proper treatment of Red Skin Syndrome.

History

In July 2009, RSS sufferer Kelly Palace created the website AddictedSkin.com based on her own topical steroid withdrawal experience. The website featured her story with photos, as well as journal articles by Dr. Fukaya, Dr. Rapaport, and Dr. Kligman. It quickly evolved into an online community of support for those afflicted with RSS.  

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 on February 3, 2012. Dr. Rapaport left ITSAN in June 2013, and Palace continued as ITSAN President until January 2015.

ITSAN Red Skin Syndrome Support has evolved into a vast network of RSS sufferers around the world contributing ideas, funds, and inspiration. ITSAN members and board volunteer many hours per week to help continue to spread the word. ITSAN has been a Member in Good Standing of the Coalition of Skin Diseases since 2014.

Board Members

All of ITSAN’s Executive Board have either suffered from Topical Steroid Withdrawal themselves or known or cared for a loved one who has.

Volunteer Executive Board:

  • JoAnne VanDyke – President
  • Kathryn Z. Tullos, RN – Executive Director
  • Susan Ryza – Treasurer
  • Loren McCormac – Secretary
  • Steve Zabriskie
  • Boz Borowiecki
  • Kathy Troutner, RN
  • Kelly Barta

ITSAN Medical Advisory Board:

  • Rajnish Kooner, DO

Attorney: Jay Fleisher, P.A.

Bookkeeper: Bonnie Campbell, Satellite Beach, FL

ITSAN Advocates for the RSS Community

  • Membership in the Coalition of Skin Diseases
  • Participating in the American Academy of Dermatology’s Inflammatory Skin Disease/Itch Measures Work Group
  • Attending the American Academy of Dermatology Annual Meeting and Scientific Sessions
  • Lobbying in Washington, D.C. with the Coalition of Skin Diseases at the Annual American Academy of Dermatology Association’s Legislative Conference
  • Working toward creating a patient registry to further future research efforts

Please visit the American Academy of Dermatology’s Patient Advocate Resource Center for more information about the partnership between members of the Coalition of Skin Diseases and the American Academy of Dermatology.

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Representatives from the Coalition of Skin Diseases at American Academy of Dermatology Association Legislative Conference, Washington D.C., September 2015. ITSAN leadership pictured: President JoAnne Van Dyke – second row, far right. Executive Director Kathryn Z. Tullos, second row, 5th from the left.

Co-founder’s message:

What has transpired since starting ITSAN is nothing short of a miracle. Beyond my own journey from steroid dependence to recovery, I discovered thousands of people all over the world, from infants to adults, who were suffering greatly from “unknown” symptoms like mine. Their lives had become a living hell. Their doctors diagnosed them with an “incurable” skin condition and they were told that the only relief they could ever have would be temporary, when using topical steroids. In many cases, their topical steroids had stopped working and their skin was getting worse.

Once we each discovered the research articles by Dr. Rapaport, Dr. Fukaya and Dr. Kligman, our answers were in sight. This is a serious, international health problem that needs attention. I encourage you to find out more about Topical Steroid Addiction / Red Skin Syndrome and the devastating effects it can have on one’s health, and to make a donation to ITSAN to help the cause.

– Kelly Palace, ITSAN Co-founder

Testimonials

ITSAN really deserves more than 5 stars, as the organization to our family means more than I could ever write here. Because of ITSAN, its board members and an entire community of fellow sufferers, we can breathe again and we have watched life come back into our son. Without this wonderful organization. we would still be sinking in the unknown and may have even lost our precious son, as he was in renal failure last year because of the spiral of his health due to the use of topical steroids. WE LOVE ITSAN!
Stephanie, Mom
Thanks to my friends & family, ITSAN, the Facebook support groups and all other sufferers of topical steroid withdrawal for all their encouragement and support over the coarse of my withdrawal. I don’t think I could have made it without you!
Gary, ITSAN member
I found this website when I was trying to find answers to why I was having chronic skin problems (that were completely new to me) after using topical steroids for five months–as prescribed by a dermatologist. This is a wonderful website full of important information and tremendous support from people who are caring and knowledgeable. From what I can see, with very little money, they do a tremendous amount. This organization is well worth supporting in any way you can!
Jul39, ITSAN member

ITSAN is a Member in Good Standing of the Coalition of Skin Diseases

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http://coalitionofskindiseases.org