FOURTH QUARTER 2023 NEWSLETTER
Wishing you healing this holiday season!
Thank you to the community for your generous donations!!
As a result of our community’s generosity, we were able to continue funding the important work outlined below. Thank you SO much to all who gave! We will have an update about how much we raised in 2023 soon!
Together we can stop anyone else from going through TSW in the future!
ICD-10 Code for TSW
In late November, ITSAN submitted a proposal for a TSW ICD-10 diagnostic code to the CDC, with the support of the National Eczema Association, Allergy & Asthma Network and National Institute of Allergy and Infectious Disease allergy training program leadership.
A big THANK YOU to everyone who submitted a letter of support to the ICD-10 committee. We received 60 letters to add to our submission!
If the proposal is accepted early next year, it will go before a review board of the ICD-10 code committee March 20th, 2024. After the review, the committee will provide a window of time for public comment and we will need hundreds of individuals from our community to weigh in voicing their support of implementing the code to offset the pushback that still exists in the medical community around TSW. Stay tuned for more soon!
National Institute of Health’s (NIH) TSW Pilot Study
The participants of the NIH Pilot Study on TSW have been contacted and data about their experience and progress is still being followed and collected. Keep their eye out for the findings of the study to be published soon! We will keep you updated as we know more.
ITSAN’s work on the Topical Steroid Withdrawal Syndrome Patient Registry continues on. We are in the programming stage with NORD (National Organization for Rare Disorders) and will soon move into the launch phase. This includes having our series of surveys reviewed by an IRB, or Institutional Review Board. An IRB is an administrative body established to protect the rights and welfare of human subjects recruited to participate in research. We are taking all of the steps necessary to ensure that your stories, experiences, and natural histories with TSW can be accurately collected and viewed as proper research. We are so excited to move forward and expect to launch in the first quarter of 2024. Keep an eye out!
Ways to advocate RIGHT NOW!
Sign the petition for topical steroid labeling changes! We have nearly 1500 signatures so far. Help us show the true numbers of people who care about this issue. In our meetings with the FDA and other governing bodies throughout the world, it helps to have real numbers present to them – and every voice counts. Please share with friends and loved ones and let’s show up! Sign here.
Report your adverse drug effects to the FDA and/or to your country’s governing body. Again, if we tell the
governing bodies there is a problem, but the numbers aren’t showing up on their end, it is not nearly as impactful. Please take a few minutes to report all of your symptoms and “Topical Steroid Withdrawal Syndrome” specifically. Report here. For guidance, watch this how-to video on ITSAN’s YouTube channel.
Media Coverage of TSW
[December] Wales Online – Dad’s daily ‘torture’ as topical steroid cream withdrawal leaves skin red raw
A beautiful song about TSW by Warrior Aby Coulibaly
When you support ITSAN, you help us raise TSW Syndrome awareness in the medical community. Your donation helps us develop new resources on ITSAN.org and provide information and support on social media and in our daily communication with TSW sufferers and caregivers around the world.
How can you help? You can donate to ITSAN here or start your own fundraiser for ITSAN. If you create a fundraiser for ITSAN, please tag us so we can share it with others. Thank you!
Questions? Email us at firstname.lastname@example.org
THANK YOU ITSAN SPONSORS
The generous giving of our sponsors allows us to do the important work of our mission – raising awareness of TSW and supporting all affected individuals. If you would like to become a sponsor, or know someone who would, please email or pass on our contact information – email@example.com