Hello TSW Community!
Hope your 2022 is off to a good start! Our mission in 2022 continues on as we raise awareness of TSW Syndrome and support affected individuals.
February 3, 2022 marks ITSAN’s 10 year anniversary as an incorporated nonprofit! We have come so far in the battle for recognition, accountability, and prevention. Here is how it all began.
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 more. It quickly evolved into an online community of support for those afflicted with Topical Steroid Addiction/Topical Steroid Withdrawal Syndrome.
Kelly Palace, co-founder of ITSAN
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. Kelly Palace then turned over leadership to Joey Brown VanDyke, a member of ITSAN’s original executive board. Joey served as ITSAN president until 2018 when she passed the torch to Kelly Barta who served as ITSAN President until October 2019. Upon Kelly Barta’s exit, Kathryn Tullos stepped in as the current ITSAN president. What an amazing group of trailblazers!
In recent months ITSAN has met with changemakers from filmmakers to activists, policymakers and medical providers, who are working to expand TSW Syndrome awareness worldwide. We thank each stakeholder and the TSW community, including you and your loved ones, who are with us on this path to change. ITSAN is a small Board working every day to end TSW Syndrome.
You can support ITSAN’s mission by donating to ITSAN’s PayPal Giving Fund here. We need donations to continue to operate and we thank you for your support.
You can help by sharing your TSW story as a patient or as a caregiver. Reach out to firstname.lastname@example.org to learn more.
This quarter’s newsletter will catch you up on ITSAN’s advocacy work, TSW support and resources, TSW warrior and caregiver stories, efforts to raise TSW awareness and more.
ITSAN Advocacy – Next steps with the FDA
ITSAN met with the Food and Drug Administration twice in 2021 and requested safer steroid prescribing guidelines, safer labeling, patient monitoring and a drug safety hearing on topical steroids. ITSAN received an update from the FDA in December 2021:
“…CDER has heard your concerns and CDER will be conducting a comprehensive review of the safety issues similar to that conducted by MHRA. Please note that it will take CDER some time to produce this deliverable.” -Professional Affairs and Stakeholder Engagement Staff (PASES), Center for Drug Evaluation and Research (CDER), U.S. Food and Drug Administration (FDA).
Last year Scratch That UK, a community and awareness campaign for TSW Syndrome, rallied TSW sufferers in the UK to report adverse effects of topical steroids to the MHRA. In response GOV.UK shared a press release stating, “The Medicines and Healthcare products Regulatory Agency (MHRA) is advising anyone experiencing skin redness or burning sensations after they have stopped using these creams or ointments to seek advice from their health professional before using these products again.”
Learn more about MHRA’s “Topical steroid withdrawal reactions: a review of the evidence” here.
It is ITSAN’s hope that the FDA will follow suit to achieve a similar triumph to help end TSW by:
- Updating topical steroid labeling with clearer usage instructions and dosage
- Clearly stating on labels that products are corticosteroid medications and warning of TSW Syndrome adverse effect
- Issuing a public health advisory directed towards both physicians and patients concerning the potential risk of developing TSWS
Highlighting Scratch That UK’s Advocacy Work