FOURTH QUARTER 2021 NEWSLETTER
Dear TSW Community,
We are thinking of you this holiday season. No one should EVER suffer from Topical Steroid Withdrawal Syndrome. ITSAN is fighting for greater TSW recognition, education, medical support and prevention.
ITSAN’s Board is made up of individuals who have either personally recovered from TSW or who have cared for a child who has healed from this preventable condition. We know the challenge of having hope, but we also know the unlimited potential for change for the better. See below for an opportunity to share how we can improve support for you by taking our short ITSAN survey.
TSW syndrome takes a severe physical toll but it also affects the mental health of patients and caregivers. We recognize how critical an accurate diagnosis is in order for sufferers to begin the healing process. Along with individualized and supportive care for your physical and mental health needs, we are wishing you and your family bright healing days and rest filled nights ahead in the new year. We know that change is coming and we thank you for standing with us to protect others.
ITSAN Meeting with the FDA
Two years ago TSW patients and caregivers spoke to the FDA about catastrophic side effects they or their child experience from topical steroids. On December 6, 2021 ITSAN met with the FDA and brought the same request for safer steroid prescribing guidelines, labeling and patient monitoring.
“Looking back, a few things are clear to me. The first is how woefully insufficient the labeling for topical steroids is – there is no clear dose, there is no indication of how many fingertip units is too many, how large a treatment area is too large or how long a time is too long. The phrase, ‘Or as directed by your doctor’ gives both patient and doctor permission to ignore age recommendations or usage guidelines. Topical steroids are commonly used for months or years, even though the clinical trials are only 2-3 weeks. And there is no mention of Topical Steroid Withdrawal Syndrome as an adverse effect.”
-Kathryn Tullos, ITSAN President, More Than Skin Deep – Eczema Patient-Focused Drug Development Meeting with the FDA – September 23, 2019
“This week ITSAN met with the FDA and brought the same request for safer steroid prescribing guidelines, labeling and patient monitoring. In addition, ITSAN requested the FDA host a Drug Safety Hearing on the class of topical steroids so that the Center for Drug Evaluation and Research and US governing medical bodies are aware of the risks of TSWS associated with topical steroid use, and will be moved to action.”
-Kelly Barta, ITSAN Executive Board Member and former ITSAN President -December 11, 2021
Keep reporting. Keep speaking up. Change is coming. You can report adverse drug reactions or side effects to the FDA from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA. Use the term “TSW” or “TSW Syndrome” when you report to the FDA. Report to the FDA here.
ITSAN Achieves NORD Membership
ITSAN is pleased to announce being accepted as a member of the National Organization for Rare Disorders (NORD). As a member of NORD, ITSAN will have the opportunity to work in partnership to develop a patient registry to bring the scope and need of TSW sufferers worldwide into focus by turning anecdotal stories into data points and eventually, into much needed research for TSW Syndrome. This registry will help us answer our most pressing questions: What is the prevalence of TSW? How long does TSW last? What helps with healing? Does the length of steroid use affect length of withdrawal? We can’t tell you how pleased we are to have achieved this milestone!
“NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.” https://rarediseases.org/about/
Support for TSW Sufferers and Caregivers
TSW Warriors and Caregivers – Take ITSAN’s short survey and help us improve support for you and your family during Topical Steroid Withdrawal. You may be new to TSW, you may be years recovered or you may be somewhere in between. TSW affects every life domain from physical and mental health, to finances, employment, relationships and personal identity. Sharing what you need during TSW will help us provide support, advocate, educate and continue to raise TSW awareness. Thank you for sharing your voice today.
Link to ITSAN survey: https://www.surveymonkey.com/r/2S9YDGX
Looking for crowdsourced recommendations from the TSW community? “Our mission at TSW Assist is to provide crowdsourced recommendations and collective data on treatments and therapies to empower the community with solutions to help alleviate the pain of topical steroid withdrawal and speed up the healing process.”
-Jason Vergara, Founder, TSW Assist
TSW Assist contains crowd sourced anecdotal solutions. It is not medical advice. All healing journeys are different and unique to each person.
ITSAN Board and TSW Community Virtual Meet Up
The ITSAN board met with the ITSAN community in a virtual meet up on December 10, 2021. We got to know each other, discussed board updates, brought up problems and brainstormed solutions together. We hope to have more meetups regularly in the future to keep the community updated, answer questions, and provide support for one another. Join us in our support group or follow us on facebook, instagram, and twitter to learn more.
TSW Syndrome Awareness in the News & Community
TSW Patient Perspective
“How many times have you heard ‘it takes time’ and ‘time is our friend?’ On our TSW/RSS healing journey, this is so very true. And as it turns out, it held true with convincing my doctor of 30 years that this is in fact TSW/RSS!
I used to think he was the coolest doctor, every time I came in with rashes on my body or face, he’d prescribe me the next strongest or newest steroid he had in his ‘closet.’ Four years ago, and after 57 years of using topical steroids I ran out of my latest cream. I called to have the prescription refilled and unless I came in to see him, he would not refill it. So, I said ‘heck with that’ and threw it in a box with many other mostly used tubes. Little did I know I would soon begin this horrific journey.
After a year in withdrawal, I decided to see Mr. Doctor to show him what over-prescribing and overuse can do to a person. He was in total denial, took samples of the ooze to test even though I told him the outcome would be staph, and it was. He prescribed antibiotics, I said no. Another year goes by and again, he is in total denial.
Year three rolls around and suddenly he’s excited about an 18 year old patient who ‘looks just like me’ and is clearing from Dupixent and I really must go on that. Again, I said no as I wanted to go through this journey as natural as possible. Then, shortly after my four year withdrawal anniversary I see him and am 90% clear. He was shocked and amazed and truly happy for me. I asked him to please promise me two things 1) do not over prescribe topical steroids and 2) share my story, ensure people are aware of TSW/RSS so that we can stop this madness, and he agreed.
So yes, time is our friend for healing, and being persistent with our doctors. How can they deny it when they follow our journey, when we keep showing up and educating them? Be your own advocate and remember, Healing Happens and time is our friend!”
Four Year TSW/RSS Warrior and still fighting
Speak Up About TSW
Share Your Story: Thank you to every TSW warrior and caregiver for the courage to share your story and pictures and to raise awareness on the difference between TSW and eczema. Every story has the power to bring change. Share your story with us: firstname.lastname@example.org
Share Your Voice: If ITSAN has helped you, please consider writing a review at Great Nonprofits so we stay Top Rated for 2021.
Thank you to our Sponsors
ITSAN has 2 amazing 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
And THANK YOU! A heartfelt thank you to all of our donors whose generosity has allowed us to do this important work. No one should go through this debilitating condition alone or without proper medical support.
Together we can raise awareness and prevent this condition for others in the future. Please donate on our website or through our PayPal Giving Fund. Remember in the US, you can donate with every AMAZON purchase on AmazonSmile. Choose International Topical Steroid Awareness Network as your charity.
Many employers will also match funds, which ITSAN qualifies for using Tax ID 45-4556484 and address P.O. Box 303, Dacula, GA 30019. For help contact Jodie Ohr at firstname.lastname@example.org.
Thank you all!