FIRST QUARTER 2023 NEWSLETTER

Hello TSW Community!

Over the past year, ITSAN’s online TSW Syndrome Support Group has seen an increase of 4.5K new members. We have 17.5K members in our global support group, over 7K followers on Instagram, and we 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 treatment.

In this newsletter, we will catch you up on:

TSW Syndrome Advocacy Training – find steps you can take to promote legislation that will protect our community. Thank you to the organizations who have signed on in support of a TSW Resolution to get Topical Steroid Withdrawal Syndrome officially recognized in the United States.
Raising TSW Awareness – learn about ITSAN’s recent advocacy efforts.
TSW Resources & Voices From the Community – together we are stronger!

ITSAN’s mission is to raise awareness of Topical Steroid Withdrawal Syndrome and to support affected individuals. Support ITSAN by making a one time donation – or become a recurring, monthly donor. Your support will help us continue the fight to end TSW Syndrome! Donate here.

ITSAN hosted a TSW Advocacy Training on February 15. Thank you to the many participants worldwide who joined us in the fight to end TSW Syndrome!

TSW ADVOCACY

TSW Awareness Day + TSW Advocacy Training

February 3rd was TSW Awareness Day and ITSAN’s 11 year anniversary as an incorporated nonprofit! We held a special advocacy training meeting in February to share how you can get Topical Steroid Withdrawal Syndrome officially recognized by your state to help promote research and provide support and protection for TSW sufferers and their families!

Watch the video to learn more and find resources to share with your legislator here.

TSW Advocacy Training: Mock Meeting with a Legislator

As a follow up to ITSAN’s TSW Advocacy Training, Kathryn Tullos, ITSAN President and Kelly Barta, ITSAN Executive Board Member shared a step by step video of a ‘mock meeting’ with a legislator. We hope you will view the video and see how easy it is to meet with your elected officials to ask for their help to recognize TSW in your state or province.

Watch the video to learn more and find resources to share with your legislator here.

RAISING TSW AWARENESS

ITSAN Represented at a Congressional Reception with the National Organization for Rare Disorders (NORD)

Over the past year, ITSAN has been working in partnership with the National Organization for Rare Disorders (NORD) to develop a Topical Steroid Withdrawal Syndrome Patient Registry. This study, being designed by researchers, medical experts and patients, will provide the opportunity for patients and caregivers around the world to share information about their experience with TSW Syndrome.

In January, Kelly Barta, ITSAN Executive Board Member and President of the Coalition of Skin Diseases, attended a reception on Capitol Hill with Congressional leaders and rare disease experts. This event celebrated “the 40th anniversary of the Orphan Drug Act (ODA), a landmark law that has benefited millions of Americans living with rare diseases.” -NORD

It is not known whether TSW Syndrome is actually “rare” or is simply under-reported. The information from the TSW Syndrome Patient Registry will be used to establish prevalence, advance research and improve care. To support this important project, donate here.

Left to right: Peter Saltonstall, President and Chief Executive Officer of NORD, Kelly Barta, Alexa Moore, Vice-President of Development, NORD

NORD patient group members

Left to right: Aliza Fink, Director of Research Programs, NORD and Kelly Barta

Artwork by Olivia Hamer titled, “Trapped in TSW” recently featured on NORD’s social media.

ITSAN Represented at the Annual Dermatology Nurses’ Association Convention

Kelly Barta, ITSAN Executive Board Member & Coalition of Skin Diseases (CSD) Executive Director, exhibited on behalf of the coalition. This event was made up of nurse practitioners, registered nurses, licensed practical nurses and medical assistants who specialize in dermatology. ITSAN became a member of the CSD in 2013, and this partnership has expanded education in the medical community on the TSW Syndrome experience.

Kelly Barta, ITSAN Executive Board Member at the Annual Dermatology Nurses’ Association Convention, February 7-9, 2023

TSW Resources

Looking for support for yourself or a loved one going through TSW Syndrome?

Find resources and support here.

Please note: ITSAN does not diagnose or recommend treatment or medication.

Applying for Personal Independence Payment (PIP) – Tips from a TSW Warrior

“I’ve just been awarded the standard living allowance for Personal Independence Payment, the UK disability benefit. It wasn’t easy and I had to fight for it.” -Lorna

TSW Community

HEAR FROM THE TSW COMMUNITY ON A RECENT ARTICLE ON STEROID PHOBIA

The authors of “#corticophobia: a review on online misinformation related to topical steroids,” a recently published article in Clinical and Experimental Dermatology, write, “Topical steroid withdrawal’, ‘red skin syndrome’ or ‘TCS addiction’ is a particularly prevalent myth currently being propagated on social media, with most content suggesting that eczema is due to a ‘leaky gut’ or food intolerance and not to skin inflammation.” Read more here.

The term “phobia” denotes extreme or irrational fears. Topical Steroid Withdrawal Syndrome patients are not abstaining from a treatment based on irrational fears — they are abstaining from a treatment that has caused an adverse effect that has worsened the original condition. Patients have the right to informed consent and they need to understand the risks as well as the benefits of the drug that they are prescribed and use. Hear from TSW patients and medical providers about the article:

Image Credit: Clinical and Experimental Dermatology

“We disagree with the assertion that topical steroid withdrawal (TSW) is a ‘myth’…We also question the claim that TCS are proven to be safe when used correctly. There are no studies, to our knowledge, examining prolonged intermittent use of potent TCS for eczema, a pattern of usage that is common, consistent with guidelines and permitted by prescribers. To worry about TSW, skin atrophy and hypothalamic–pituitary–adrenal axis suppression is not an exaggerated fear and warnings about them are not misinformation.”

-Celia Moss, Department of Dermatology, Birmingham Women’s and Children’s NHS Foundation Trust, Katy Ross, TSW patient and advocate, Andrew Proctor, CEO of the National Eczema Society

WE NEED CHANGE!

Currently, much needed usage and dosing information about topical steroids is absent or confusing. Help us petition for safer, more accurate labeling of topical steroids!

Sign the petition here.

Watch this short video to learn more.

TSW Community Book Project: Six books supporting the TSW journey on the way!

An amazing group of fellow TSWers are developing books to serve as needed resources through the harrowing journey that is TSW. To participate with your own contribution, get updates on the project, and be informed when each book is published, learn more here.

There are opportunities for contributors to share:

Personal TSW stories
Stories from parent caregivers supporting children during TSW
Stories from caregivers supporting partners or family members during TSW
Stories from parents experiencing TSW
TSW healing stories of all ages

The purpose of the project is to provide support and inspiration, as well as a collection of healing recommendations gleaned from the community over the years. The books are being written by members of the TSW community and will be published by Red Zone Publishing, founded by Jodie Ohr, ITSAN Executive Board member. The group will donate all profits to ITSAN.

Four Year Anniversary of “Preventable: Protecting our Largest Organ”

March 22nd was the 4th anniversary of the release of “Preventable: Protecting our Largest Organ.” We thank Briana Banos for her tireless work to educate the medical community about Topical Steroid Withdrawal Syndrome and to ease the isolation and mental health toll on TSW sufferers and caregivers. Briana is currently working on a documentary sequel called “Still Preventable.” Learn more here.

Find highlights from the work of filmmaker and TSW changemaker, Briana Banos here.

TSW Warrior Highlight

Janelle Harris, ITSAN Executive Board Member, was recently featured in an article about her Topical Steroid Withdrawal experience and recovery. Find her TSW story and more TSW stories here.

Learn more about Janelle’s story on TikTok here.

ITSAN

ITSAN Selected as a 2022 GladSkin Gives Recipient!

We are pleased to share that ITSAN was selected to be one of the nonprofit recipients chosen in 2022 for a Gladskin Gives award!

This award will support the important work of ITSAN’s mission – raising awareness of Topical Steroid Withdrawal Syndrome and supporting all affected individuals.

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

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 fee-free through our PayPal Giving Fund.

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 more information email info@itsan.org

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