THIRD QUARTER 2021 NEWSLETTER

Third Quarter 2021 Newsletter

Hello TSW Community!

We have so much to share about the steps towards raising Topical Steroid Withdrawal Syndrome awareness and prevention that brought us hope recently but before we do, we want to say keep up the hope where you are too. We know that TSW Syndrome affects every part of your life and it takes strength and courage to speak up about this preventable condition, whether to educate a loved one, communicate your needs with your doctor or your child’s doctor, or to reach out for mental health support. We are with you and know that each person has different needs during TSW and everyone deserves to be validated, to access a proper diagnosis and to have support at every healing milestone.

With you in mind, we continue the work of important partnerships that will help improve the lives of TSW sufferers and caregivers. This is a responsibility we think of every day, as we witness the growing need for support and as we advocate for TSW awareness and prevention. In October we reached 11K members in ITSAN’s Private Facebook Support Group, a place where members come together with different, personal TSW healing journeys. ITSAN’s Instagram has more than doubled to 4.7K followers this past year. TSW awareness is spreading and change is coming. In this issue we will highlight ITSAN’s effort to speak up for potentially millions of TSW sufferers worldwide, and how working in partnership with stakeholders in the medical community is leading to change.

ITSAN Partnering for Change

ITSAN President Kathryn Tullos joined Dr. Peter Lio to present “The Skinny on TSW and Steroids” at the National Eczema Association’s Virtual Eczema Expo on August 28. Discussion included the severe potential side effects of topical steroid use and the need for TSW research, physician and patient education, and safer topical steroid prescribing and monitoring guidelines.

A recent Dermatology Times article, New Frontiers Open for AD, Eczema Solutions, highlighted Eczema Expo discussion: “Diagnostic criteria are lacking, Lio said, but several important features can help identify TSW. The most sensitive signal, he said, is that when patients who have used long-term TCS discontinue treatment, eczema flares up, often at levels worse than its initial presentation.”

ITSAN President Kathryn Tullos and Executive Assistant Jolene MacDonald joined NEA’s Eczema Expo panel, “TSW: What Now?” with Dr. Eric Simpson, Briana Banos the creator of Preventable and Linette Roungchun, TSW and eczema activist. Discussion included the current struggle many face to access an accurate diagnosis and the importance of recognition of TSW among medical providers, along with shared decision making between doctor and patient.

Recordings of these events are currently only accessible to Expo attendees. We hope to provide access to the recorded sessions when they become available in early January 2022.

ITSAN Meeting with the FDA

On September 21, Kathryn Tullos, ITSAN President/CEO and Kelly Barta, ITSAN Executive Board Member/Past President (seen here prepping for their FDA meeting), met with the FDA’s Deputy Director of Safety and other FDA officials about Topical Steroid Withdrawal, which is currently affecting tens of thousands and potentially millions of people.

“This meeting wouldn’t have been possible without the tremendous efforts and contributions from the thousands who showed up to report and share their stories in order to change the standard of care for eczema patients and raise awareness about the potential adverse effects of long term topical steroid use.” -Kelly Barta

Topics presented to the FDA included:

An Overview of Topical Steroid Withdrawal Syndrome
Symptoms of Topical Steroid Addiction BEFORE and AFTER discontinuing topical steroids
Estimated prevalence of Topical Steroid Withdrawal Syndrome in the U.S.
Patient Impact: Adult Experience (below is one adult patient story shared):

Patient Impact: Pediatric Experience (below is one pediatric patient story shared):

Steroid exposure and cumulative effects in atopic dermatitis patients
Significant gaps in labeling and instructions
Asks for the FDA

ITSAN shared the following asks with the FDA:

ITSAN also shared the concern of underreporting of TSW with the FDA:

During ITSAN’s Spark Virtual Patient Conference in May attendees were asked poll questions (above) and results highlighted the critical need to report adverse effects of topical steroid creams to the FDA.

“A 2001 FDA memorandum documented that 202 reports submitted for pediatric patients who had experienced adverse side effects to topical steroid creams spurred additions to the label. We have thousands in our groups. We need to show up. If the FDA can suggest that manufacturers add side effects after 202 reports in 2001, they can add TSW Syndrome to the warning labels in 2021.” -Kathryn Tullos, ITSAN President/CEO

Your report is your chance to speak up about TSW Syndrome, so NO ONE has to follow in our footsteps. If you suffered or are suffering through TSW Syndrome please use the term “TSW” or “TSW Syndrome” when you report to the FDA. Report to the FDA here.

You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA.

ITSAN will meet to review discussion questions and next steps with the FDA – date TBD, following the FDA’s internal meeting specific to TSW on 10/22.

Partnering to Improve Support for TSW Sufferers and Caregivers :

ITSAN hosted A LIVE on September 14th with Dr. Patrice Little and Briana Banos, the creator of Preventable. Check out their conversation for meaningful steps a patient and doctor can take towards a positive partnership. Learn tips for how TSW patients can advocate for their health needs and how medical providers can validate and support the physical and mental health needs of their patients. Watch here.

ITSAN raised awareness, for the second year in a row, about World Atopic Eczema Day! Many within the TSW community started off with eczema and developed TSW Syndrome after using topical steroids to treat their eczema. The more we can raise awareness within the eczema community, the more we can “unite” and problem solve together so that TSW Syndrome can be prevented. See below for an important survey!

Jolene MacDonald, ITSAN Executive Assistant, spoke to the FDA as a panel participant at the Little Airways, Big Voices Patient-Focused Drug Development Meeting in September. She discussed her son’s asthma experience during TSW Syndrome, including challenges with treatment and strategies that helped.

As a member of the Coalition of Skin Diseases, ITSAN advocated for TSW patients at the 2021 American Academy of Dermatology Virtual Legislative Conference. ITSAN Board members Natalie Lawton, Kelly Barta and ITSAN Executive Assistant, Jolene MacDonald represented in the House and Senate, specifically for Pennsylvania, Georgia, Maine and Vermont – and ultimately for the voices of ALL of the TSW community!

SURVEY!

Call to Action – Did your TSW begin with eczema? We need your voice!

ITSAN is partnering with the Global Patient Initiative to Improve Eczema Care to explore how patients with eczema and their caregivers experience medical care, treatments, and the burden of the condition. If you are a patient or a parent of a child with eczema and/or if you are experiencing TSW due to treatment used to treat eczema, please take a few minutes to complete a brief survey in order to contribute to this study. Participants will be entered into a drawing for a USD $100 gift card. Thank you in advance!

TSW Syndrome Awareness in the News & Community

Check out this recent press release from GOV.UK to see the steps towards TSW Syndrome awareness and prevention happening in the United Kingdom with the help of MHRA, @scratchthat.uk, TSW activists and topical steroid adverse effect reporters!

“Product information for topical corticosteroids is being updated to include safety warnings on withdrawal reactions. We have developed a patient safety leaflet to support patients and health care professionals, which includes advice on how to reduce the risk of severe reactions.” -Medicines and Healthcare products Regulatory Agency (MHRA)

Every voice helps end TSW Syndrome. Thank you to the TSW community for continuing to speak up about TSW.

Jake’s story here.
Savannah & Boaz’s story here.
Keri’s story here.
Sarah & Scarlet’s story here.
Megan’s story here.
Georgianna’s story here.

ITSAN Board News!

In August, ITSAN welcomed Natalie Lawton to the Board of Directors. Natalie is a certified Health Coach with a master’s degree in Counseling Psychology and a background in Human Resources. She joined ITSAN while still caring for her 20-year-old daughter recovering from TSW Syndrome. Natalie is focused on spreading awareness of TSW, enhancing resources and providing guidance in the ITSAN support group.

Help Us Fund A Patient Registry

Thank you to an ITSAN Veteran turning 60 who celebrated by matching any donations made to ITSAN during September up to $5k. Thank you to every donor who contributed! We will continue to fundraise towards creating a patient registry which will turn anecdotal stories into data points and eventually, into much needed research for TSW Syndrome. Please donate on our website or through our PayPal Giving Fund. It counts!!

Speak Up About TSW

Share Your Voice: If ITSAN has helped you, please consider writing a review at Great Nonprofits so we stay Top Rated for 2021 .

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: info@itsan.org

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 – info@itsan.org

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 johr@itsan.org.

Thank you all!