First Quarter 2021 Newsletter
Welcome to ITSAN’s First Quarter 2021 Newsletter. Our community has grown significantly over the last few months; we count over 9k currently in ITSAN’s Private Facebook Support Group, over 3.7k followers on Instagram and have heard from TSW sufferers representing over 50 countries.
ITSAN’s mission is to raise awareness of Topical Steroid Withdrawal Syndrome and to support affected individuals, caregivers and healthcare providers.
Recent achievements in TSW Syndrome recognition and thanks to:
- The British Association of Dermatologists and the National Eczema Society (UK) for highlighting critical issues about Topical Steroid Withdrawal Syndrome in a joint position statement. Read more here.
- The National Eczema Association for their informative article for individuals with eczema and their caregivers about Topical Steroid Withdrawal Syndrome — written in collaboration with top doctors, ITSAN and the TSW community. Read the article here. Also, check out their new “TSW hub” with new information on TSW updated monthly.
- Joana Ceddia, a popular YouTuber who shared her experience going through TSWS and has received over 2.6 million views! View the video here.
- Dr. Heba Khaled and translators who have helped make the comprehensive video, “A TSW Overview,” accessible in Spanish and Korean.
Save the Date – ITSAN Spark Conference
ITSAN will host a virtual patient conference on Saturday, May 15, 2021. Please join us for a day of support and TSW Syndrome education.
Success stories and tips from medical providers for supporting physical and metal health during TSW Syndrome will be featured.
More information coming soon!
Industry Collaboration & Steroid Stewardship
ITSAN was one of five patient advocacy groups to attend the first Patient-Focused Drug Development meeting with the FDA about eczema treatments in 2019. The report from this meeting called More Than Skin Deep, led to an alignment of steroid stewardship missions with Allergy and Asthma Network (AAN). A survey was developed by ITSAN President Kathy Tullos and AAN’s State Advocacy Project Manager, Kelly Barta (currently an ITSAN board member as well) to improve research & treatment for skin issues, including safer steroid prescribing guidelines, and to inform about cumulative steroid load experienced by people in the eczema community.
Topical Steroid Withdrawal Syndrome in the News & Community
Top Left: It takes courage every time a TSW warrior or caregiver speaks about their trauma. No one should know Topical Steroid Withdrawal Syndrome and no loved one should witness it. Thank you Jessica for sharing your story. Watch the 2 minute broadcast here.
Top Middle: ITSAN is working to petition for labeling changes on the drug insert for topical corticosteroids, and to connect patients with doctors who understand how to diagnose, treat, and ultimately prevent this debilitating disease. With safer topical corticosteroid labeling, potential side effects of overexposure to steroids will become well defined and ultimately prevented by medical professionals. Learn more.
Top Right: Briana Banos, the creator of Preventable: Protecting Our Largest Organ, recently shared a series of interviews with the stars of Preventable in a series called “Where Are They Now?” ITSAN President Kathy Tullos and her husband Jason Tullos were among those interviewed and discussed their son’s recovery from TSWS. Preventable’s two year anniversary was March 22. Celebrate by visiting the Preventable YouTube channel and sharing with others.
Bottom left: The voices of TSW warriors and caregivers are at the forefront of raising awareness of TSW Syndrome. ITSAN features warrior highlights including Melanie who is 7 years TSW, and shared her wisdom and strength in this Daily Mail article.
Bottom middle: ITSAN maintains a list of TSWS supportive doctors recommended by members. If you are looking for a place to start, check the list in the Files section of the Facebook group: ITSAN Topical Steroid Withdrawal Syndrome Support Group – Private Group
Bottom right: @tsw_witnesses highlights pictures and interviews with TSW warriors from around the world to raise awareness about TSW Syndrome. In February@tsw_witnesses reached 100 voices from the TSW community!
ITSAN recognizes the need for mental health support for caregivers and warriors. See some recent tips below. Caregivers, find support here.
Be gentle on yourself. Every day your love, your strength and your instincts champion your child’s recovery. Returning to health and balance comes with continuing to identify what your child needs, including supportive medical providers, understanding school providers, family and friends who rise to the opportunity to learn about Topical Steroid Withdrawal Syndrome and to stand with you. Believe in your child’s potential to heal and believe in yourself. Take care of their parent, their caregiver, their hero. Self forgiveness supports physical and emotional healing for the entire family.
Read more here.
Imagine a team of guides that will stand with you as you support your child’s recovery. Your guides might be a parent who has a child six months ahead of yours in their recovery from Topical Steroid Withdrawal Syndrome. Or six years.
Ask for help with groceries. Ask for help with anything and everything. You will not look back and wish you didn’t ask. You will look back at how you grew a safe, caring circle of support for your child and you during TSWS.
Read more here.
When a medical provider is unable to recognize that the treatment for a child’s eczema has worsened their condition resulting in TSWS and threatens to report a parent to Child Protective Services if they do not comply (despite parent’s documentation that TCS is not treating and is now worsening their child’s health), trust is broken…Trust your instincts to continue to support your child’s mental and physical health by identifying qualified medical providers to develop a patient centered care plan. Trust that global awareness is growing about TSWS and you will reach a place of health and healing for your child by continuing to ask questions, to seek appropriate care, to learn about TSWS and to tell your story. Change is coming.
Read more here.
Be an Advocate: TSW makes advocates out of all of us since the condition is not yet well known. Here are some ways you can help:
Complete an Adverse Drug Reaction Report with the FDA: You can report adverse drug reactions or side effects to the FDA from anywhere in the world. But if outside the US, please also report to your country’s equivalent to the FDA (Food and Drug Administration). The more places you report, the more your experience will be seen and heard. Report adverse effects here.
ITSAN runs on donations from you. Please help support the efforts of our community to drive awareness. Consider a Matching Donation from your workplace, or a monthly donation amount. If we had more funding we could do more.
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, to raise awareness on the difference between Topical Steroid Withdrawal Syndrome and eczema, to promote TSWS prevention, early detection, accurate diagnosis & proper treatment. Every story has the power to bring change. Share your story with us: firstname.lastname@example.org
Thank you to our Sponsors: ITSAN now 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.