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ITSAN‘s proposal for diagnostic ICD-10 code for TSW has been accepted and we need your help!

ITSAN submitted a proposal for a TSW diagnostic ICD-10-CM code and we went before the ICD-10 committee’s review board on March 20th! We need your help in voicing your support to get this across the finish line and implemented into the healthcare system!

We are looking for members of our community (and their loved ones, doctors, teachers, ANYONE!), who would be willing to provide letters of support to the ICD-10 code committee, explaining why it is so important for this condition to have its own code.

Introduction of a new ICD-10-CM code for TSW would enable healthcare providers to precisely report TSW cases, improving efforts to establish the true TSW incidence and prevalence. Having a TSW code would also enhance research endeavors and understanding of the natural history of this condition. Additionally, the availability of a specific code would increase awareness among healthcare providers about the existence and significance of TSW as a potential complication of topical corticosteroid use, thereby guiding the judicious application of high-potency TCS in the management of atopic dermatitis. We need this!!

Since there is still so much resistance to TSW in the medical community, it is up to us to flood this committee with letters of support, expressing the urgency and need for a TSW code.

Download the TSW ICD-10 Code Support Letter Template HERE!! Once you personalize your letter, the public comment period will open following the meeting; comments should be sent directly to NCHS at You have until April 21th to submit.


Does the ICD code work globally?  We are still working to get a straight answer on whether the implementation of an ICD-10 code into the US system will be available globally, and when, but are looking into it.

Do I need to write a letter if I already wrote on in November?  Yes, every communication the CDC receives from the public will help bolster the overall support they will consider toward the approval and implementation of a TSW code.  If you submitted a letter in November, you would just need to tweak several spots in the original letter that are reflected in the updated template on the ITSAN site. Mainly, the code # (L30.81) and that we are no longer asking for a review, but an approval.

Do people have to use the template?  No, anything that voices your support of the TSW code will suffice.  We recommend including your personal experience with TSW and why you believe a code would be helpful.

Do you need to be a US citizen to write the letter? No

Do we know what this will mean for TSW sufferers not from the US?  Even if the code is not immediately available through the world’s healthcare systems, its existence will help substantiate the fact that TSW is a real/validated condition and the code can be referred to in clinical settings.

Does this have to pass in other countries before the code is implemented internationally?  We are working to find this answer.

Why is it important to have an ICD code for TSW? To identify incidence and prevalence; promote research; improve care and treatment for patients; raise awareness of the condition with healthcare providers; ensure a level of protection for families mitigating accusations of medical neglect when parents choose not to treat with topical steroids; lead to more judicious prescribing of these drugs

Where do I send my letter?

How did ITSAN get involved with the ICD 10 proposal? This is an issue that has been on ITSAN’s to-do list for many years, but we needed to come to a place in time where we had enough physicians on board to support and enough evidence in the real world for TSW to be considered a “universally recognized condition.”  While working on the TSW pilot study at NIH, Dr. Ian Myles drafted the original proposal needed to submit to the CDC, which was a very detailed and comprehensive overview of the evidence in literature and rationale behind implementing a TSW code.  Since the NIH is a governmental institution, they are not able to directly submit, so Dr. Myles shared the proposal with ITSAN to submit.  ITSAN reached out to other national organizations and submitted with the support of National Eczema Association, Allergy & Asthma Network along with NIAID (an institute covering AD research at the NIH).  Kelly Barta leads the US based Coalition of Skin Diseases and helped support the submission of other ICD-10 codes for members groups, learning more about the process and ways to succeed.  She had the help and assistance of these in navigating the complexities and requirements of submission,


Patient Registry

We are so excited to be in the next phase of the patient registry – programming! Our survey questions have been programmed into the platform. ITSAN is using the IAMRARE platform through National Organization for Rare Disorders (NORD) – mainly because it allows the data collected to be solely owned and controlled by ITSAN. The next step is to test the questions with a focus group to make sure they are easy to understand and answer. When questions are too hard to answer, people drop off. We need your story to count! Proving the prevalence of TSW is our first priority. We need to show the world how many of us this is happening to. We are also trying to depict the true nature of TSW signs and symptoms so clinicians can more accurately and easily diagnose. After the focus group testing phase, we will be ready to roll out and launch! It’s been a really long time in coming and we are in the home stretch! 

For more information about ITSAN’s Topical Steroid Withdrawal Patient Registry, see here

ITSAN will be exhibiting at the National Eczema Association‘s expo in Denver June 27-30th. Hope to see you there!

Media Coverage of TSW

Support ITSAN

When you support ITSAN, you help us raise TSW Syndrome awareness in the medical community. Your donation helps us develop new resources on 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


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 –