Question 1: What is ITSAN?
Answer 1: ITSAN is a non-profit organization dedicated to spreading awareness about Red Skin Syndrome, also known as Topical Steroid Addiction or Topical Steroid Withdrawal. Their full name is International Topical Steroid Addiction Network. Also they have been known as Topical Steroid Awareness Network.
Their website is www.ITSAN.org .
The youtube channel is linked here.
ITSAN Red Skin Syndrome Support has grown into a thriving world-wide online community where members share, comfort and encourage one another. ITSAN serves international populations as a resource for the individual, the caregiver, and the healthcare provider.
Question 2: How old is ITSAN and how did it get started?
Answer 2: Again, we are amazed at how one individual’s experience and heartache can turn a question into a snowball movement and potentially a revolution in less than a decade. In 2009 a woman started the website AddictedSkin.com from her own experience in Red Skin Syndrome and her personal topical steroid withdrawal experience into an international resource and safe zone for so many! Kelly Palace posted her photos as well as articles and white papers from Dr. Fukaya, Dr. Rapaport, and Dr. Kligman.
By 2012, Palace changed the website to ITSAN.org and filed for non-profit status with Dr. Rapaport as a co-founder. Soon after, Dr. Rapaport left ITSAN while Palace continued as president until 2015. Today ITSAN is a member in Good Standing of the Coalition of Skin Diseases since 2014. ITSAN is now hosting its own conference.
Question 3: How does ITSAN work to get the word out?
Answer 3: ITSAN advocates for the RSS community by:
1. Being a member of the Coalition of Skin Diseases
2. Member of the International Alliance of Dermatology Patient Organizations IADPO
3. Community outreach at the Eczema Expo by National Eczema Association NEA
4. Participating in the American Academy of Dermatology’s Inflammatory Skin Diseases/Itch Measures Work Group
5. Attending the AAD Annual Meeting and Scientific Sessions
6. Lobbying in Washington, D.C. With the Coalition of Skin Diseases at the Annual AAD Association Legislative Conference
7. Working toward creating a patient registry to further future research efforts
8. ITSAN has developed a survey to estimate Cortico-Steroid Exposure (CoStEx) that can help quantify Withdrawal & Recovery experience. The survey was developed by an MD and a PharmD. It is confidential and would help those suffering with TSA/W. Here is the link to that: ITSAN SURVEY.
9. They developed a brochure that can easily be printed that can be shared with your medical team or friends and family ITSAN BROCHURE
10. They produced a really cute cartoon whiteboard video that easily explains the whole deal with this crazy phenomenon ITSAN CARTOON VIDEO
Question 4: What’s on the immediate agenda for ITSAN to do more?
Answer 4: To break it down in steps, they are :
Developing a member registry so that the growing Facebook support group will be transferred into a database of actual members.
Organizing a webinar series to help offer more support
Host one-day conferences.
Question 5: What’s holding ITSAN back from really getting the word out there?
Answer 5: Remember this is a volunteer organization of actual RSS sufferers that are barely getting their health and lives back from the tight grip of topical steroid withdrawal recovery. The passion of getting the word out there is immeasurable from these warriors that sacrifice their own time and effort at their own expense. They are only limited by lack of funds. Many times the volunteers are relying on the $5, $10 and $50 donations from the ones that are already suffering with limited incomes due to the debilitating condition and not being able to work.
Question 6: What can I do to support ITSAN.org?
Answer 6: There is still so much to do to get the word out. It’s a two-part process. One important aspect is to work on a medical outreach program directly educating medical practitioners on topical steroid side effects.The second is public outreach directly to the eczema/psoriasis populations to help them be fully informed before, during and after the decision to use topical steroids.
Remember it was less than 10 years ago that one woman’s voice started this snowball movement, and today ITSAN is a lifeline for so many to make better-informed decisions about their health through support.
Imagine if your donation just happened to be the spark that helped someone avoid unnecessary suffering…