THIRD QUARTER 2023 NEWSLETTER
A Note From Our President
Hello TSW Community!
We are so thrilled to be able to share so much good news and progress with you. The process for creating change is definitely not a quick one and is all about the long game. But we are on the cusp of so many years worth of work finally bearing fruit.
First of all, we are nearing completion of the programming phase of our TSW Patient Registry with NORD (National Organization for Rare Disorders). A patient registry allows us to to get a true count of how many people are affected by TSW Syndrome world wide, which will establish prevalence. It will also allow us to follow people over time, to show the usual course and natural history of TSW. What does TSW look like for the majority? What are the main symptoms – especially that would differentiate TSW from Atopic Dermatitis or severe eczema? We will also be able to collect some information on treatments to see if there is anything helpful for the majority, or not helpful. This is a lengthy process, so stay tuned for more details as our launch date approaches!
What we really need now to keep this project running are donations. Once we launch, we will need to pay a $5000 fee. Please help if you are able. If you are not able, please share in your social networks ways others can give. We need everyone to get this project done! ITSAN is also in need of volunteers to do various tasks. If you have a skill you think might be helpful, please reach out! Right now, we need the most help with content creation for social media.
Thank you all for your support – we can do this together!
ITSAN is currently working on submitting a proposal for a diagnostic ICD-10 code for TSW and we need your help!
The 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!!
We are looking for members of our community 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. If you are interested in helping provide the patient voice, please reach out to email@example.com for more information. We can provide a template letter to make the process very easy! Submissions are needed by early November.
Great news! International Topical Steroid Awareness Network (ITSAN) has earned a spot on the 2023 Top Rated List! Our community has shared their inspiring stories and supported our work. Thank you ITSAN community!
ITSAN would like to give a special and enormous THANK YOU to parting board member Jolene MacDonald! Jolene has been with ITSAN for the past 4 years serving on the board in various capacities. She most recently served as Board Secretary and Executive Assistant, accomplishing so much in her time with us. Jolene answered emails and messages from all over the world with true care and empathy. She created and posted all of our social media and updated our website with information for patients, caregivers, and medical providers. She applied for grants and reached out to sponsors. She applied for our membership in NORD and helped get our Patient Registry off the ground. Jolene did a million behind the scenes things and a million thankless tasks. She truly is the heart, soul, and voice of the patient. Jolene, thank you for the gift you have given the TSW community for the last 4 years. We are so appreciative and couldn’t have come this far without you. We wish you well in all of your future endeavors!
ITSAN welcomed Alicia Fasciocco to the Board of Directors in August. She also stepped into the Board Secretary role in September. Alicia is an HR executive in the healthcare tech space and a graduate of Flatiron School’s Software Engineering bootcamp. In October 2022, after a few years of new and unexplained symptoms, her dermatologist diagnosed her with Topical Steroid Addiction. She is one year into TSW after 25 years of usage for eczema. Alicia is excited to bring her skills and passion for accessible and equitable healthcare to the ITSAN board. She hopes that with education, research, and mutual support, we can help patients and caregivers in TSW today and prevent others from going through it in the future.
Sit Down With ITSAN
On World Eczema Day, Kathy Tullos, ITSAN President, spoke with Jen Garcia, LMHC (Licensed Mental Health Counselor) and mother of a child with TSW. In this discussion, they explore the impact TSW and eczema have on mental health, as well as helpful tips to navigate this difficult journey.
ITSAN board member and President of the Coalition of Skin Diseases, Kelly Barta, sat down to discuss TSW with the National Eczema Association as part of their Webinar Wednesday series. She was joined by Peter Lio, MD, Assistant Professor of Clinical Dermatology and Pediatrics Dermatology at Northwestern University Feinberg School of Medicine and Founding Director of the Chicago Integrative Eczema Center.
October: ITSAN on Luke Jacobsma’s TSW Podcast
Change is often slow–it takes a dedicated team to keep fighting month after month, year after year. Ever wondered who ITSAN is and what we do to work towards change? Listen to Luke Jacobsma’s TSW Podcast as he interviews ITSAN’s President, Kathy Tullos, to find out what is happening behind the scenes and how YOU CAN HELP!
Media Coverage of TSW
[September] The Independent – ‘I didn’t want to be here anymore’: The agony of women suffering with topical steroid withdrawal
[October] Fashion Journal: “My skin was this open wound”: The horrifying reality of topical steroid withdrawal
Mini’s Story: Three Years Topical Steroid Withdrawal
“By 2018, my whole body and face were red and felt like they were on fire.”
Traveling for Answers: Riccardo’s Topical Steroid Withdrawal Story
“For 14 years, I traveled looking for answers. I met healers and doctors in Brazil, Switzerland, Austria, and more but still my journey was not complete.”
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