About ITSAN

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

ITSAN is the only 501(c)(3) non-profit charity serving the global TSW Syndrome community as a resource for the individual, the caregiver, and the healthcare provider. ITSAN has grown into a thriving world-wide online community where members comfort, share, and support one another.

ITSAN conducts outreach and member engagement through webinars, newsletters, social media, and moderated online support groups. We also participate in numerous national and international coalitions and advocacy initiatives to advance our mission.

Mission

To raise awareness of Topical Steroid Withdrawal Syndrome and support all affected individuals.

Goal

Prevention, early detection, accurate diagnosis, and proper treatment of Topical Steroid Withdrawal Syndrome.

How ITSAN Advocates for the TSW Syndrome Community

ITSAN board members and volunteers in April 2024 advocating for a federal TSW Awareness Resolution in Washington, D.C. From left to right: Kelly Palace, Janelle Harris, Mark Palace, Rayna Brown, Tamy Bellis, Joey Brown, Kelly Barta

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.

Current and Ongoing Projects:

A repository of current information on TSW for the patient and medical provider communities.
An international online community closed Facebook group for TSW patients and their families to receive support and education
Year-round advocacy efforts to local and federal officials for the adoption of TSW Awareness Resolutions
Petitioning the US Food and Drug Administration (FDA) for labeling changes to drug inserts for topical corticosteroids, which would include warnings of TSW and more appropriate usage guidelines
Introduction of a TSW distinct ICD-10- CM diagnostic code with the Center for Disease Control and Prevention (CDC)
Raising Awareness of TSW to Healthcare Providers, Patients, Scientific Researchers, Policy Makers and Consumers
Patient registry: In support of research efforts and making the first estimate of TSW Syndrome prevalence
Physician Registry: Connecting our patients with doctors who understand how to diagnose and treat TSW Syndrome is a top priority

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

ITSAN is a Member of the International Alliance of Dermatology Patient Organizations

ITSAN is a Member of Derma Care Access Network

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Meet Our Team

ITSAN Board of Directors

Kelly Barta

President

Kelly Barta began working with ITSAN as a member of the Board of Directors in 2016 while still recovering from TSW, an experience which left her bed-ridden for 1 ½ years and healing for several more. The unspeakable suffering, isolation, and lack of medical awareness and support for those going through TSW drove Kelly into the world of advocacy. Her passion to be a voice for the voiceless has led her to bring awareness to the great needs of this underserved community in academic, medical, regulatory and political arenas. Her hope is that in the near future the potential side effects of overexposure to steroids will become household knowledge, along with being well defined, understood, and prevented by our medical professionals. Above all, she hopes that TSW will finally become a thing of the past! Kelly currently is the Executive Director of the Coalition of Skin Diseases and lives in Atlanta, Georgia with her two sons. In her spare time, she loves spending time with friends and family, being out in nature, working in her garden, and reading.

Kathryn Tullos, RN

Treasurer

Kathryn Tullos is a Registered Nurse from Houston, Texas with a degree in Communications. She was a bedside nurse in pediatrics for 7 years, before taking a “break” to stay home with her 4 kids. In mid-2013, her son suffered severely from Topical Steroid Withdrawal Syndrome (TSWS) for 18 months, due to steroid creams prescribed for his eczema. Kathryn used the experience with her son and her passion for research to throw herself into patient advocacy, and try to help others navigate this often misunderstood iatrogenic disease. She joined the ITSAN board in 2015, helped write and relaunch the ITSAN website, and eventually became Executive Director. She stepped down briefly in 2018, but she couldn’t stay away for long. Kathryn returned to ITSAN in October 2019 as President and CEO. Kathryn’s main goals in her advocacy with ITSAN are: 1) petition for labeling changes on the drug insert for topical corticosteroids, and 2) to connect patients with doctors who understand how to diagnose, treat, and ultimately prevent this debilitating disease. Though it may be a long road, she takes courage in the words of her Great Aunt Ruth Ann, “My dear, you are assertive.” In her free time she loves to go on dates with her husband, sing show tunes with her kids, Netflix binge, and memorize the Hamilton soundtrack.

Janelle Harris
Secretary

Janelle Harris joined the ITSAN Board of Directors in February 2022 while recovering from TSW. She began her TSW journey in October 2017 after suffering from eczema since birth and likely using topical steroids for 57 years. Her husband found ITSAN, thus realizing what was happening to her skin. She is excited to bring her skills and her enormous passion to the ITSAN Board in an effort to help bring awareness, education and advocacy to those experiencing TSW, and to end this horrible, unnecessary addiction.

Janelle retired from Ball Corporation as Graphic Services Director in September 2014. During her near 30 year tenure, she developed and built what is still known today as the most state of the art metal packaging graphics center. She has several published articles and was the first female to serve on the Board of Directors for the International Metal Decorators Association and served as Secretary/Treasurer, Vice President and President of the Board. Janelle and her husband Mark live in Erie, Colorado and enjoy a family cabin near the beautiful Sangre de Cristo mountain range. They have a blended family of 6 girls and 1 boy, and 12 beautiful grandchildren. They enjoy time with family, golfing, hiking and hanging out with their bernedoodle, Jasmine. Janelle is also a Wellness Advocate with doTERRA International, sharing essential oils and helping others achieve optimal health.

Michelle Li Board of Directors

Michelle Li joined ITSAN as a Board Member in 2021 as a veteran TSW warrior. She stopped using corticosteroids to treat her worsening eczema in 2015 and only found out about TSW through ITSAN. The resources and community fostered by ITSAN gave her the hope she needed to overcome the painful symptoms of TSW. Since then, she has been an advocate for TSW warriors on social media channels. She’s passionate about raising awareness for TSW and providing hope for people with visible skin conditions. Michelle has an ever curious disposition and works as a Data Scientist at a large Ecommerce platform. She lives in Toronto, Canada and loves to eat delicious food (who doesn’t?), spend quality time with her big family and bask in the sunshine. She’s excited to use her creativity and data wizardry skills to bring change and to prevent this condition in future generations.

Natalie Lawton
Board of Directors

Natalie Lawton joined the ITSAN Board of Directors in 2021 while still caring for her 20-year-old daughter recovering from Topical Steroid Withdrawal Syndrome. The experience left their family searching for answers. Natalie relied on ITSAN for resources. She felt drawn to ITSAN as she was impressed with their professionalism, shared passion for patient advocacy and unwavering dedication to the task of ending TSW. She felt strongly about serving this underserved community as she watched her daughter’s life completely turn upside down due to this excruciating syndrome. She formed relationships with members in the TSW community and knew she needed to help on a grander scale and ITSAN made that possible. She is focused on spreading awareness of TSW to the Eczema community, enhancing resources for those needing guidance as well as maintaining the ITSAN support group so that every member has a safe space to heal. She also manages ITSAN’s social media channels, spreading much needed awareness to the community. She has also represented ITSAN and the Coalition of Skin Diseases as a TSW patient advocate, spreading awareness on Capitol Hill in legislative meetings. She is determined to alleviate the unnecessary suffering caused by this preventable condition in the name of her daughter and every other person so unnecessarily affected. Natalie is a certified Health Coach with a master’s degree in Counseling Psychology and a background in Human Resources and Corporate Operations. In her spare time, she loves to travel to visit her kids in college, watch lacrosse and play pickleball.

ITSAN Medical Advisory Board

Patrice Faye Little, DNP, FNP-BC
Medical Advisory Board

Dr. Patrice Faye Little is the Editor-In-Chief of NP Student Magazine, Clinical Instructor of Nursing at Georgia State University Perimeter College, Perioperative Nurse Practitioner at Atlanta Ophthalmology Associates, Founder of Nurses as Media Consultants & Speaker’s Bureau, Contributor for The Christian View Magazine, and Host of P.O.W.E.R. Talks weekly Christian Broadcast. Dr. Little has worked as a nurse for 11 years and is an active member of United Advanced Practice Registered Nurses (UAPRN) Gwinnett/Forsyth Chapter and the American Association of Nurse Practitioners (AANP).

Dr. Little has disseminated her research findings at local symposiums and published her first scholarly article in The Journal of Thermal Biology at age 22. She authored two books and continues to contribute playground reviews and tips for caring for newborns in the Atlanta Parent Magazine. In her spare time, Dr. Little enjoys speaking annually at Redan High School and New Life Academy of Excellence’s career days and facilitating support groups at Partnership Against Domestic Violence (PADV) organization’s shelter. Most of all, Dr. Little enjoys freestyle dancing on Friday nights with her hubby and two children.

Dr. Sandipan Dhar, MD, DNB
Medical Advisory Board

Dr. Sandipan Dhar, MD, DNB is a renowned Pediatric Dermatologist & Atopic Dermatitis researcher of National & International repute. He works as the Professor and Head of the Department of Dermatology at the Institute of Child Health and is the Senior Visiting Consultant at AMRI Hospitals in Kolkata.

He is currently the President of the Indian Society for Pediatric Dermatology (ISPD), and is one of the key persons for establishing the subspecialty “Pediatric Dermatology” in India. Dr. Dhar also serves as the editor-in-chief for the Indian Journal of Pediatric Dermatology (IJPD), and is a member of the editorial board of several journals in Dermatology and Pediatric Dermatology. He also serves as a Council Member of the International Eczema Council.

Dr. Dhar has published more than 220 scientific papers in various indexed journals of which more than 100 papers are on Pediatric Dermatology and 50 papers on Atopic Dermatitis. His papers have been abstracted and quoted in Year Books of Dermatology, various standard text books of Dermatology & Pediatric Dermatology. He has authored “Colour Atlas and Synopsis of Paediatric Dermatology”, the first book on Pediatric Dermatology from India. Dr. Dhar is one of the few Indian Dermatologists to contribute chapters in various Dermatology Text Books read by millions of students and post-graduate researchers across the world. He is a reviewer in several Dermatology journals published from the UK and the USA.

His fields of interest are Pediatric Dermatology, Atopic Dermatitis, Urticaria, and adverse cutaneous drug eruptions.

Dr. Koushik Lahiri, MBBS, DVD, FRCP
Medical Advisory Board

Dr. Koushik Lahiri is a Senior Consultant Dermatologist of Apollo Gleneagles Hospital in Kolkata, India and the Honorary Director of WIZDERM. He also serves as Vice President of the International Society of Dermatology, is a Member of IADVL and ACSI, Fellow of IADVL Academy of Dermatology, International Fellow of American Academy of Dermatology, Foundation Fellow of Asian Academy of Dermatology and Venereology and member of European Academy of Dermatology and Venereology. He is also a Fellow of all three Royal College of England, London, Glasgow and Edinburg.

Dr. Lahiri has authored the book, A Treatise on Topical Corticosteroids in Dermatology, and has championed the fight against the abuse and misuse of topical steroids in his country of India. He most recently was honored by the American Academy of Dermatology with their prestigious “Members Making a Difference Award” for his work, and 14 year long battle, in successfully having OTC topical steroids banned by India’s Ministry of Health.

Dr. Marcello Monti
Medical Advisory Board

Dr. Marcello Monti is a former Professor of Dermatology at the University of Milan, Italy of which he now serves as Consultant Dermatologist.

He graduated from University of Pavia, School of medicine in 1977 and completed his internship and residency in Dermatology from University of Milan in 1980. He later completed his internship and residency in Infectious and Parasitic Diseases from the University of Pavia in 1982.

Early on in his career he was Clinical Researcher, then Clinical Associate Professor in Dermatology at University of Milan where he taught Clinical Dermatology in medical courses of San Raffaele Hospital, Sacco Hospital and Humanitas Clinical Institute.

During his long career serving as Chief Dermatologist in many Hospitals of Milan, he continued to improve his diagnostic capabilities and refine his therapeutic solutions focusing on innovative protocols for the treatment of the most common dermatological pathologies.

History

In July 2009, TSW Syndrome 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 Topical Steroid Addiction/Topical Withdrawal Syndrome.

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 has evolved into a vast network of TSW Syndrome 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 members and board volunteer many hours per week to continue to educate and advocate on behalf of the entire TSWS community.

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!

StephanieMom

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 course of my withdrawal. I don’t think I could have made it without you!

GaryITSAN 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!

Jul39ITSAN member

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

ITSAN has been a lifeline for me and I could never thank this wonderful organization enough for everything it has done for me and all the TSW sufferers out there.

Anonymous member

ITSAN has helped my sister greatly. She has been suffering from topical steroid withdrawal for about two years and the support of the community has given her the strength to carry on many times when she was at her wits end.

Royce

Incredible charity providing support, resources and awareness to those suffering from TSW. As someone who has been dealing with this condition for over 3 years, ITSAN and its network of others going through the same thing really has been a life saver, I will forever be grateful to ITSAN.

Anonymous member

ITSAN is an important and incredibly helpful organisation which raises awareness, and offers support to people recovering from ‘eczema’ caused by topical steroid creams. ITSAN was my support system when I was in hell with nowhere else to go, there is a forum to vent and discuss the experience you are having, and it makes it all a little easier to bear. I would give ITSAN 5 stars for raising awareness, and another 5 stars for the advice and support offered by the helpful, hopeful, and supportive community.

Amy_260

This organization saved my daughter from on-going immense suffering—something umpteen doctors couldn’t do. My daughter is living life to the fullest now, no longer prisoner in her own skin. Forever grateful for their dedication to helping others and raising awareness about Red Skin Syndrome caused by topical steroids. Their website is informative and support groups invaluable— a true life saver. Thank you!

Kristina V.1

ITSAN saved my son’s life and skin! We would have been lost without them! Thank you ITSAN!

Loren M.

Thank God literally. If it weren’t for ITSAN we would still be living a nightmare. I am ever so grateful for this nonprofit. It was an answer to my prayers. Without you we would still be in the trenches fighting this war without ammunition. God Bless.

Donna Lyons R.

About ITSAN

Mission

Goal