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 medical care. There is urgent need for patient support and TSW research, and ITSAN is working in partnership with the National Organization for Rare Disorders (NORD) to develop a TSW Syndrome Patient Registry.
We are determined to accomplish our goal, though we face daunting challenges to fund the work involved in this important longitudinal study. If you have wanted to support ITSAN, now is the time. We need your help within the next two weeks. Please donate in July. Help us advance research and fight to end TSW Syndrome. Donate here.
It is not known whether TSW Syndrome is actually “rare” or is simply under-reported. We hope that information from this global resource will be used to establish prevalence, advance research, develop a diagnostic profile and improve patient care. We are here for the TSW community and your support advances our mission. Thank you!
Kelly Barta, ITSAN Board member shares an important update and how you can help. We need your help before July is over. Thank you ITSAN community! Donate here.
TSW ADVOCACY
This spring, ITSAN has advocated for TSW Syndrome patients and caregivers both nationally and internationally, and every step of the way we are fighting for TSW recognition, research, education and prevention. We value the opportunity to collaborate with the patient and medical community to bring an end to this preventable condition.
March: TSW Syndrome Patients Represented at the Coalition of Skin Diseases (CSD) Meeting in New Orleans
ITSAN had a presence at the American Academy of Dermatology conference in New Orleans, as an exhibitor with the CSD. As a member of the CSD, ITSAN has had the opportunity to amplify the voice of TSW Syndrome patients and caregivers.
Kelly Barta, ITSAN Board member and President of the Coalition of Skin Diseases (CSD), led a CSD Development Day in New Orleans, and shared a patient impact video that included Renata Feiner, a TSW Syndrome advocate and former ITSAN Board member.
April: TSW Syndrome Patient Experience Shared at the Coalition of Skin Diseases (CSD) Congressional Briefing in Washington, DC
Kelly Barta, ITSAN Board member and President of the Coalition of Skin Diseases (CSD) presented to legislators and staffers on the needs of dermatology patients during CSD’s Hill Day.
Briana Banos, Creator of Preventable: Protecting Our Largest Organ, joined in the advocacy efforts and shared her TSW story with legislators.
Watch the video to learn about Renata’s TSW story.
Kelly Barta, ITSAN Board member, presenting with De De Gardner, Chief Research Officer, Allergy Asthma Network (AAN), to leaders of the International Atopic Dermatitis/Eczema patient groups, at the GlobalSkin – Elevate 2023 conference in Brussels.
June: TSW Syndrome Patients Represented at the GlobalSkin Conference in Brussels, Belgium
ITSAN Board members, Kelly Barta and Michelle Li attended the GlobalSkin – Elevate 2023 Conference, in Brussels for dermatology patient organization leaders. Kelly Barta and De De Gardner, Chief Research Officer, at Allergy Asthma Network (AAN) presented findings from the patient survey that was developed by ITSAN and the Allergy Asthma Network (AAN) to international eczema leaders. Learn more about the conference here.
ITSAN Board members, Kelly Barta and Michelle Li attended the GlobalSkin – Elevate 2023 Conference.
Kelly Barta, ITSAN Board member presenting at the Eczema Expo. Image credit: @theitchy_chi
June: ITSAN presented on TSW Syndrome at the National Eczema Association’s Eczema Expo in Orlando, Florida
ITSAN had a booth at the Eczema Expo, and Kelly Barta, ITSAN Board member, presented with Dr. Peter Lio on “The Skinny on Steroids & TSW.” Kelly joined Dr. Olivia Friedman in leading a TSW support group session. Learn more about Eczema Expo here.
First Topical Steroid Withdrawal Syndrome Awareness Resolution Passed in Florida!!!
We are so proud of Tamy Bellis, whose advocacy efforts paid off in getting the very first Topical Steroid Withdrawal Syndrome Awareness Resolution passed in her home state of Florida!
This piece of legislation established a TSW Awareness Day in the state of Florida, and serves as a supportive document for our community in acknowledging the existence of TSW Syndrome, and the great need for research around the condition. Having a resolution passed in your state or province provides a credible source to bring to doctors who may not be supportive or aware of TSW Syndrome. It will help bolster efforts to gain recognition in the medical world and push forward work to address the need for product label changes and education around the proper use of topical steroids and their associated risks.
If you are interested in getting similar legislation passed in your state or province, you can learn more (read the TSW Resolution!) and join the campaign here.
TSW Case Studies
Two articles were recently published on Topical Steroid Withdrawal Syndrome case studies. The TSW patient and caregiver experience is leading the way towards the development of TSW Syndrome diagnostic criteria and appropriate care. Every story helps protect others from suffering from this preventable condition.
In April 2023, the article “Topical steroid withdrawal syndrome in a mother and son: A case report” by Aileen M Feschuk and Michelle E Pratt, was published in Sage Journals.
“This report adds to the growing body of evidence that topical steroid withdrawal syndrome is its own entity, rather than an exacerbation of the underlying dermatosis, and adds to the few pediatric reports of topical steroid withdrawal syndrome.” Read more here.
In April 2023, the article “Topical Steroid Withdrawal: An Emerging Clinical Problem” by Tenzin Sung-rab Brookes, Richard Barlow, Padma Mohandas and Anthony Bewley was published in Clinical and Experimental Dermatology.
“Dermatology healthcare professionals need to be aware of TSW, and offer support with shared decision-making when considering treatments.” Read more here.
TSW Community
In celebration of World Art Day on April 15th, ITSAN featured the work of artists worldwide 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. Learn more here.
Topical Steroid Withdrawal Syndrome is more than skin deep. If you are a TSW warrior or caregiver, keep believing in and loving yourself. It is important to reach out for help, to find support and to have hope. Find resources for TSW patients and caregivers here.
“I called a dermatologist I used to see in New York City to make an appointment. A month later, in his office, I showed him ten photos of my face over the year and described my symptoms. He immediately said, ‘You have Topical Steroid Addiction.'” -Alicia
Read about Alicia’s TSW story here.
Support ITSAN
Thank you to Michelle and Dan for fundraising for ITSAN! Every donation helps us work to address challenges TSW patients and caregivers face, including accessing TSW informed medical providers, information and resources.
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 info@itsan.org
Michelle Li, ITSAN Board member, recently ran a half-marathon to raise money for TSW Syndrome research. Learn more and donate here.
Dan’s friend has been going through Topical Steroid Withdrawal Syndrome, and Dan is running 1,000 miles to raise TSW Syndrome awareness and support ITSAN! Learn more and donate here.
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 – info@itsan.org
