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.

 

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

CSD_logo

http://coalitionofskindiseases.org

 

Representatives from the Coalition of Skin Diseases at American Academy of Dermatology Association Legislative Conference, Washington D.C., July 2018. ITSAN leadership pictured: President Kelly Barta, first row, far right –   Secretary Jodie Ohr, second row, 3rd from the left.

Board Members

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

Volunteer Executive Board:

  • Kelly Barta – President
  • Jodie Ohr  – Secretary
  • Susan Ryza –  Treasurer

ITSAN Medical Advisory Board:

  • Rajnish Kooner, DO

Bookkeeper: Bonnie Campbell, Satellite Beach, FL

Kelly Barta
Kelly BartaPresident

‘Letter from the President’ –  6/1/2018

Kelly was a long-term user of topical steroids and entered into TSW in June of 2012.  She entered quite by accident through weaning off of the meds due to increasing food and environmental allergies. The very first night that the symptoms kicked in after cessation of the steroids she found ITSAN’s website, had the infamous Aha! moment and the rest is history. It’s been a long road to recovery, being bed-ridden for the 1 1/2 years in the beginning, but is happy to say that she’s now nearly to the end and is back in the thick of life again.  Having experienced such debilitating health herself during RSS, Kelly was compelled to help others and has been able to do just that by joining forces with ITSAN in 2016 to raise awareness and offer assistance to those suffering. In addition to working with ITSAN, she owns and operates an E-Commerce Event Supply Store and assists in home-schooling her 2 sons. She resides in Atlanta, GA with her husband Jason and sons Jackson and Haven.  For fun she loves to travel, sit by the fire with a good book, visit with friends over a great cup of coffee,  get her hands in the dirt of her ever-changing garden or just lounge by the pool, soaking in the goodness of the sun.  Living through something as difficult and challenging as TSW has awakened her heart toward the suffering and has fanned into flame the desire that her life and work would bring hope and relief to the world around her.

Meet the Team

Jodie Ohr
Jodie OhrSecretary
Jodie Ohr joined ITSAN as Secretary on the Board in the spring of 2018 after having gone through topical steroid withdrawal (TSW) for over two years.  The fact that her TSW journey could somehow be considered moderate, as challenging and unbelievable as it was, drove her to want to speak up for others going through TSW, some who are home-bound and others who are only months old.  She developed an ‘activist kit’ that contains the resources necessary to amplify anyone’s voice who may be wanting to speak up about the little-known but somewhat common effects of steroid medications.  Jodie has over 20 years experience in the technology sector, working with such companies as CA, Gartner, and Forrester Research.  Currently, she works for CompuCom in the digital workplace sector as Analyst Relations Director.  Jodie lives in the Charlotte, North Carolina area with her husband and two children, and just finished building a new home on five acres where she can finally try her hand at growing vegetables.  She enjoys travel, hiking, and is also active on the Women’s Advisory Board for Mecklenburg County, NC.  
 
Susan Ryza
Susan RyzaTreasurer

Susan is a veteran RSS/TSW survivor. After quitting steroids in September, 2011, she had all the typical, then-mysterious symptoms. After finding the forerunner to ITSAN’s website, she knew what was happening to her and the rest is history. Now almost completely back to normal and completely steroid-free, Susan continues to run her jewelry business and, using her business experience, has handled ITSAN’s finances since February, 2015. “I’m very grateful to ITSAN for showing me the way out of my skin suffering. ITSAN’s forum was my entire social life for at least a year. I’ve made so many great friends all over the world as a result. Knowing that there are still many people out there who are suffering and looking for answers, I’m dedicated to keeping ITSAN alive and thriving to raise awareness of this terrible condition and help other people get through it.”

Rajnish Kooner, DO
Rajnish Kooner, DOMedical Advisory Board

Rajnish currently works as an associate director at Urgent Care in San Diego at a large medical group where he has been for the past 15 years.  Has been suffering from TSW for the past 3 1/2 years now.  He enjoys working out, running and camping, and makes an annual trip to Yosemite each year to camp for a week.

How 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.

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