International Topical Steroid Awareness Network
www.itsan.orgAbout Topical Steroid Withdrawal Syndrome:
Topical Steroid Withdrawal Syndrome (TSW Syndrome), also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a debilitating condition that can arise from the use of topical steroids to treat a skin condition. TSW Syndrome can also arise from topical steroid use in individuals with no prior skin condition, such as with cosmetic use or applying to someone else.
TSW Syndrome is characterized by inflamed, diffuse, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. The original problem escalates as it spreads to other areas of the body. Breaks between treatments become shorter, or no longer possible. This exacerbation is often mistaken for “worsening eczema,” despite strict adherence to treatment.
In addition to skin symptoms escalating (stinging, inflammation, shedding, weeping, and bone-deep itch), a cluster of new symptoms appear: enlarged lymph nodes, edema, hair loss, nerve pain, insomnia, changes in appetite, fatigue, depression, and anxiety. This cluster of symptoms is a “syndrome.” Patients endure severe secondary complications, requiring multiple daily interventions, for a protracted period of time. Many sufferers are bedridden and housebound for months to years before symptoms abate.
TSW Syndrome is an iatrogenic condition, which means it is a condition caused inadvertently by a medical treatment. Not everyone who uses topical steroids will develop TSW Syndrome. It is unclear why some individuals experience this complication secondary to topical steroid therapy and why others do not.
About ITSAN (International Topical Steroid Awareness Network):
In July 2009, TSW Syndrome sufferer Kelly Palace created the website AddictedSkin.com based on her own topical steroid withdrawal experience. In January 2012, Palace changed AddictedSkin.com to ITSAN.org and was granted 501 c 3 nonprofit status in February 2012. Since that time, ITSAN has evolved into a vast support network from around the world, and the only non-profit supporting patients enduring Topical Steroid Withdrawal Syndrome.
Mission: To raise awareness of TSW Syndrome and support all affected individuals.
Goal: Prevention, early detection, accurate diagnosis, and proper treatment of TSW Syndrome.
ITSAN aims to accomplish these goals through patient engagement, research, and education.
ITSAN offers patient support through the following ways:
- In-person support group meetings throughout the United States
- Biannual conferences
- Monthly educational webinars
- Frequent communications, keeping members up to date on the latest TSW research and advancements, inspiring patient stories, and educational and engagement opportunities
- Providing helpful, accurate, medically-vetted information free to patients through website
- Physician Referrals
- Promotion of clinical trials, research studies and patient surveys
ITSAN represents individuals and caregivers who are going through TSW Syndrome from 45 countries, and throughout the United States. ITSAN.org serves as a resource for the individual, caregiver and medical professional.
