FIRST QUARTER 2024 NEWSLETTER We’re off to a great start in 2024! 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, explainin ..read more

Julia’s Topical Steroid Withdrawal Story Before TSW (Topical Steroid Addiction symptoms) “You will have to live with your troubles for the rest of your life. Here is a stronger ointment to use in the future. Come back if it doesn’t work, and we’ll try something else [stronger].” That’s what one of the many dermatologists I visited told me. He gave my new rashes a quick glance before focusing on the screen to prescribe more ointments and sometimes even tablets. He always asked surprisingly few questions compared to the amount of information I provided during the visits. Since I was a small c ..read more

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! Our fundraising efforts continue for 2024. We see glimmers of hope for a future where TSW no longer exists. Help us today by donating, hosting a fundraiser, or volunteering with us! Together we can stop anyone else from going through TSW in the future! ITSA ..read more

Mini’s Story – Three Years Topical Steroid Withdrawal How did your health condition begin? I was diagnosed with eczema at six months old and was prescribed topical steroids to manage my rashes and dry skin. As a child, I always struggled with my skin and was told by doctors to use the steroid creams more and more frequently as the flares kept coming back. Every time I went to see the doctor, they would say I would eventually grow out of it. I never did. Every year, I was prescribed higher potency steroids and told to use them more frequently. In 2015, I started to worry about my dependency ..read more

Traveling for Answers: Riccardo’s Topical Steroid Withdrawal Story The link between my eczema and my travels had a definite beginning. In 2003, like many of my peers, I was preparing to choose my course of study, steeped in the typical ignorance of an eighteen-year-old, but with an extra ingredient, totally my own—a nonconformity that characterized me throughout my adolescence with eczema. This disease had always been a part of me, like asthma and food allergies, but the redness on my face and arms, at a delicate stage like high school, forged my character. I was not bullied, though I coul ..read more

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 ..read more

SECOND QUARTER 2023 NEWSLETTER Hello TSW Community! Your voice is helping to change medical history! In this newsletter, we will share how we brought the TSW patient voice to recent medical and legislative conferences in New Orleans, Washington DC, Brussels and Orlando. While ITSAN does not medically advise, we are building bridges within the medical community to improve patient care. In the past few months, over 1,000 new members have joined ITSAN’s online TSW Syndrome Support Group. We have 18.9K members in our global support group and many are seeking TSW supportive ..read more

Alicia’s Story – Five Months Topical Steroid Withdrawal One snowy morning in 2022, I woke up with a swollen, red, burning face, tingling all over my body, and nausea. As someone with lifelong eczema and allergies, unexplained rashes were nothing new to me, but the systemic symptoms gave me pause. I called a local dermatologist and due to snow closures, I had a phone consultation. He diagnosed me with contact dermatitis and prescribed topical and oral steroids. Within 24 hours of taking the first dose of prednisone, my symptoms subsided. As a 25 year user of topical steroids for eczema, wit ..read more

WORLD ART DAY 2023 In celebration of World Art Day 2023, ITSAN is proud to feature the work of artists from around the world who have experienced Topical Steroid Withdrawal Syndrome. The impact of TSW on the mind, body and spirit of TSW sufferers and caregivers can not be fully expressed in words. We thank each artist for the opportunity to feel and to be understood. Art by Olivia HamerUnited Kingdom “Early TSW Days” “This is not eczema” @oliviamurrayactress (Instagram) @tsw_paintingthejourney (Instagram) Art by Mischa CoetzeeCape Town, South Africa “Treasure in Jars of Cl ..read more

FIRST QUARTER 2023 NEWSLETTER Hello ITSAN Community! Over the past year, ITSAN’s online TSW Syndrome Support Group has grown by 4.5K members. We have 17.5K members in our online support group, over 7K followers on Instagram and have heard from TSW sufferers representing over 50 countries. While governing agencies in the United Kingdom, Canada and Singapore have alerted the public about topical corticosteroids and the risk of Topical Steroid Withdrawal, there is an urgent need for patients worldwide to access an accurate diagnosis, supportive care and safe, individualized t ..read more