A beautiful dream is coming true this July and I absolutely cannot wait!
So many amazing TSW Superstars coming together in one place to share hope, provide support and work together toward healing. This event brings together doctors, researchers, dedicated advocates and people who’ve fought through TSW and won. It’s the event I wish existed all those years ago when I was desperate for answers and in such need of encouragement and guidance through a very dark and difficult season.
It’s going to be one big family reunion - and guess what, there is room for more! If you’ve been touched by TSW or eczema, I hope you’ll come and join us!
To learn more, click here: /tsw-summit-event/
Today is International TSW Awareness Day. This post was the first time I ever went public about my experience with TSW, in April 2018, and showed the ugly pictures of what this condition does to a person. When I saw it go live, sitting on the couch with my sister Jodi, I cried. I never wanted to be known in the world for this. Who wants to be known for the most painful, dark and horrific time in their life? But this is awareness. This is how we save others from experiencing what we have.
If you know someone dealing with a skin condition, please talk to them about the risk of dependence on topical steroid creams and the ensuing, much more severe, condition of topical steroid withdrawal syndrome (TSW). It is upending lives and takes years to recover from. TSW is preventable, but it is affecting countless people due to a faulty understanding of these drugs. Change is coming, but it takes an awful lot of time. In the interim, we need to inform each other as individuals. To learn more about TSW go to:
To all my dear friends in this community - those old and new and yet to come, all my love to you today. This is a battle I wouldn’t wish for anyone to have to fight. But I am grateful for your presence and courage in the trenches with me and for the comfort you have brought me during this long season. ❤️ #tsw #thisisnoteczema #topicalsteroidwithdrawal
We are honored to welcome Kelly Barta, President of @itsan.nonprofit , for a special live conversation hosted by our incredible host, @its_justchi . Together, we will explore the realities of TSW, eczema, and the important work being done in patient advocacy.
This live is meant to support, educate, and bring our community together.
Set your reminders!
📅 December 9th | ⏰ 7 PM EDT
Today’s the day we’ve been working toward for nearly a year!! Finally, there is a one-stop-shop to get involved in the fight to eradicate TSW. If you or a someone you love has been affected by the devastation of TSW, this is a way to make sure your experience is seen and heard - and it’s the way we end this - together. Head to the ITSAN Action Hub and get started!!! Link in bio….
#itsan #tsw thisisnoteczema
A heartfelt BRAVO! to our friends in the UK tackling the tough topic of dermatologist perspectives on TSW. @jem.brown , so thankful your continued advocacy in academia on behalf of TSW patients.
Favorite line in the discussion section: “Meaningful engagement with patient leaders in relevant organizations such as ITSAN or Scratch That may demonstrate that dermatologists are willing to listen, and to co-create best practice guidelines.” - We’re here, ready and willing to listen too, and to work together to help those who are suffering.
This is a direct appeal to the @aadskin1 to address this critical issue. Over the past decade, Patient Advocates have repeatedly shown up asking for help, to be included in the development and updating of clinical care guidelines and for scientific research into TSW, only to be turned away. As this paper clearly states, clinicians across medicine are looking to the AAD and BAD for leadership and guidance in the diagnosis and treatment of this condition. We implore you once again to take up the challenge and change medical history in the understanding and use of topical steroids.
#topicalsteroidwithdrawal #ITSAN
Grateful for the opportunity to meet and connect with Kelly Barta - President of ITSAN @itsan.nonprofit , and Sarat Pothuri, ITSAN Board Member!
We discussed TSW education, advocacy, and awareness efforts, and imagined a future where change brings hope and support to all TSW warriors.
The TSW community's resilience and determination to drive change is truly inspiring.
Let's continue to uplift and support TSW Warriors and Caregivers in this journey.
#TSWAwareness
Big news today with the publication of the TSW pilot study results, run at NIH, in the Journal of Investigative Dermatology! Another major milestone for this community in raising awareness of TSW and addressing this condition!
Still on a high from witnessing history this week! 🥹 On February 3rd, I stood in the Georgia State Capitol as Rep. Soo Hong introduced a resolution officially marking Topical Steroid Withdrawal (TSW) Awareness Day in Georgia. Six years ago, I was bedridden, just learning about this condition with barely any resources. I never imagined we’d be here—watching it discussed on the House floor, in front of people with the power to help drive real change for the thousands suffering from TSW.
I’m beyond grateful to have crossed paths with @kellybarta and @itsan.nonprofit , whose tireless advocacy and leadership is moving the needle in getting TSW the medical support and recognition it desperately needs. All credit to her and her team for getting this work done.
#TSW has over a billion views on TikTok, yet there is still a major gap in adequate care.On a brighter note though, we locked in follow-up meetings with legislators to discuss next steps and how to keep the momentum going. Change is certainly here! 🙌🏾
#TSWAwareness #TSWAdvocate
***TSW is a result of the use of topical or oral steroids often prescribed to treat conditions like eczema and psoriasis. For more info, visit ITSAN.org.
EPIC TSW Day at the Georgia State Capitol!
A huge THANK YOU! to Representative Soo Hong for introducing a resolution officially making Feb 3rd TSW Awareness Day and calling for more acknowledgment and research into this condition.
While snapping a pic after her speech on the House floor, Rep Hong informed us a number of her colleagues had already approached her wanting to learn more. Every office we talked to today was highly interested and wanted follow up meetings to help strategize w us how to address this preventable condition that is upending and ripping to shreds countless lives.
It’s been a long, hard road fighting for recognition of TSW and change to the way topical steroids creams are prescribed and used, but change is coming - I feel it my bones!!!!! 🙌
#TSWDay #ITSAN #topicalsteroidwithdrawal
Finally got this baby turned toddler of a book in our local library system. What a surreal moment!
I spent countless hours here w my boys when they were young, learning, growing and getting inspired - hoping this gift will return the favor to my fellow Georgians ❤️
Last week my sister Sarah was in town and had the idea of shooting a “TSW State of Affairs” video w all the latest developments in the fight to end this madness. and ways our community can get involved. We have come so far, but still need to keep pushing!!! We’re in this together and will change this together. Link to video in my bio.
One update I forgot to mention in the video: after dialogue with the FDA since 2021, we received the following from FDA's Center for Drug Evaluation and Research (CDER) last fall:
"CDER has completed its review of withdrawal reactions associated with topical corticosteroid use. We are currently exploring options for updating the labeling for topical corticosteroids and developing communications for patients, consumers, and healthcare providers."
It's coming!
Also wanted to clarify, while this recent NIH study is not the 1st to look at physiological addiction and withdrawal issues from topical steriods, like those conducted by Dr. Rapaport and others in the past, it built on earlier research and highlighted in a clear way through recent breakthroughs in biotechnology, a distinction between atopic dermatitis (eczema) and TSW Syndrome. This has been needed to help end the hot debate around TSW being severe eczema and promote further research to better understand TSW and identify more appropriate treatments. #TSW #thisisnoteczema #ITSAN #nea #aan
