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

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http://coalitionofskindiseases.org

 

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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.

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:

  • 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

Meet the Team

JoAnne VanDyke
JoAnne VanDykePresident

Joey has been president of ITSAN since 2014 after coming through her own longsuffering journey of Red Skin Syndrome. Her passion to help raise awareness of RSS is deeply inspired by seeing children afflicted with steroid-induced disease, and the fact that her own daughter and granddaughter have suffered RSS as well. Joey loves to spend time with husband, family and their many grandchildren. Some of her favorite hobbies include taking walks, beaches, boating, cookouts, eating healthy foods, gardening, dancing, singing, laughing, sightseeing, thunderstorms and campfires.  She believes in crying with the hurting and laughing with the joyful. She is inspired by people who aim to overcome life’s obstacles and pain while helping others in the process. One of Joey’s heros is Nick Vujicic, a man born with no arms or legs, yet he lives his life to the fullest while encouraging others. A quirky thing about Joey is her love of old-school cartoons and slapstick comedy like I Love Lucy, Abbott and Costello & the Marx Brothers. Joey also likes to put ice cream in her hot cereal.

Kathy Tullos, RN
Kathy Tullos, RNExecutive Director

Kathy Tullos is a wife and mother of four children. She spends her time chasing after her kids, adoring her husband, singing in a professional choir, working with the youth at church, advocating for sufferers of Red Skin Syndrome, and researching/writing printed and web content for ITSAN.org. She is a retired Registered Nurse specializing in Pediatrics in the hospital setting. In addition to nursing, she has a BA in Communications from Brigham Young University. Her journey with ITSAN began in June 2013 when her 3 year old son began his topical steroid withdrawal. She was searching for answers as to why her son’s skin and health seemed to get worse, despite diligently treating his out of control eczema with topical steroids. She will be forever grateful for the information and support she received from ITSAN that allowed her son to finally regain his health, after an 18 month battle with RSS (June 2013 – November 2014). Kathy’s goal is for Red Skin Syndrome to be recognized early, treated properly, and prevented entirely. Her hope is that someday soon any patient will be able to go to any doctor and get the correct diagnosis and treatment. She works to try support those going through RSS and to build bridges with the medical community. She has been a member of the ITSAN board since February of 2015.

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.”

Loren McCormac
Loren McCormacSecretary

Loren McCormac has been on the board of ITSAN since 2012 when her son was diagnosed with Red Skin Syndrome.  Her son Kline, ( age 7) has had eczema since birth and was put on topical steroids for his eczema at 4 months old. By 2 years of age the steroids had stopped working and Loren searched and searched for ways to help her poor baby with his full body flares. Thankful after endless internet searches she found Kelly Palace and learned about the damage topical steroids can do. Kline is 5 years off steroids as of February 2017. It has been a hard road and Loren is so thankful for Itsan and all of their support through out this withdrawal process. Loren hopes that one day red skin syndrome will be accepted by the medical community and recognized well before people have to go through this horrific withdrawal process.

Steve Zabriskie
Steve Zabriskie
Steve Zabriskie has been a member of ITSAN’s board since May, 2015. He lives in San Francisco and has worked for 15 years as an Interactive Producer and Web Designer at some of the largest technology companies in Silicon Valley. Over the past 10 years he worked on the Marketing Communications team at Apple, often working directly with Apple’s executive team.  He recently completed a two year stint in Istanbul overseeing Apple’s digital marketing expansion into the Middle East, Russia and Turkey markets. He came to work with ITSAN in 2015 after watching his 5 year old nephew struggle with a painful and debilitating withdrawal period while suffering from RSS. He studied Cell Biology and Philosophy as an undergraduate at the University of Utah, and received a Master’s Degree in Liberal Arts from Stanford University. His passions include travel, literature, vinyl records, and stand-up comedy.
Boz Borowiecki
Boz Borowiecki

Boz is a retired business executive with over 25 years experience in medical and healthcare industries. He has served as Chief Executive Officer or Chief Operating Officer in both for-profit and non-profit companies.  In addition to his participation on the Board of ITSAN he volunteers his time on the Board of Trustees of the Loyola Early Learning Center and serves as the Chairman of its Steering Committee for the start-up of a new pre-school serving the poor in inner city Baltimore.  He has been happily married for over 37 years and he and his wife have three grown children. Although they started their married life in the Chicago area, career moves have taken them to California and Maryland and they now live in the Baltimore area. In retirement they are frequent fliers, visiting family on both coasts and back in the Midwest. Boz became involved in the field of topical steroid addiction and withdrawal through the suffering of his adult son who is now entering his fifth year of severe complications following cold-turkey cessation of topical steroid use. After years of physician-prescribed use of topical steroids that had continued escalating to more frequent application of increasingly more potent drugs with diminishing results and more frequent complications, he finally learned about addiction and withdrawal through the ITSAN website in 2013. In his free time, Boz enjoys travel, golf and biking.

Kathy Troutner, RN
Kathy Troutner, RN

Kathy Troutner is grandmother of Aiden whose journey through TSW and RSS began at age 5. Kathy began her career as an Oncology Nurse, and left direct patient care to build a team overseeing a prominent Cancer Center. She helped create  comprehensive support services for patients that included nutritional education, pain management, spiritual care, and social services. As an executive healthcare administrator, Kathy made the decision to leave her career in order to help her daughter Katie care for Aiden. Through this harrowing experience, Kathy saw her daughter remain courageous beyond imagination with never ending compassion and strength. Katie was often met with resistance from the medical community and a reluctance to acknowledge that Aiden was suffering from TSW and RSS. Two and a half years later Aiden, now eight years old, is able to sleep through the night and has visibly healed. Aiden is now participating in sports for the first time, playing little league with endless energy and enthusiasm. Drawing from the methods and ideas that she learned from her family’s struggle with RSS, Kathy joined ITSAN to share this experience with other family members as they support their loved ones and help them make it through TSW and RSS. Her days now are filled with a renewed sense of joy, appreciation for life, and for the power of love that heals the body and the unseen wounds we carry inside.

Kelly Barta
Kelly Barta

Kelly was a long-time 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 a heightening in 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 raising awareness and offering 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. For fun she loves to travel and discover new amazing places, sit by the fire with a good book, visit with friends over a good cup of coffee, discover new delicious recipes to try out on her family, 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.

Rajnish Kooner, DO
Rajnish Kooner, DOMedical Advisory Board

Rajeek currently works as an associate director at Urgent Care in San Diego at large medical group where he has been the past 15 years.  Has been suffering with 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