ADVOCATE – Find ways to take action!

Image credit: change.org

Sign the Petition

Did you have the information you needed to make an informed decision about topical steroids?

Help us petition for safer, more accurate labeling of topical steroids! 

Having standardized usage instructions on the label will help both patients and doctors prevent overuse as well as recognize  symptoms of adverse effects when they arise.

Sign the petition here. 

Together we can raise our voices and help end TSW Syndrome!

Report to the FDA: Advocate for the safety of others.

  • You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world.
  • Report here.
  • If outside the US, please also report to your country’s equivalent to the FDA.
  • Use the term “TSW” or “TSW Syndrome” when you report to the FDA.
  • Medical providers can also report patient adverse effects during and/or after stopping topical steroid creams to the FDA.

Image credit: U.S. Food & Drug Administration

View steps on how to report to the FDA.

Kathryn Tullos, ITSAN President and Molly Evans, past ITSAN Board Member share a step by step video on how to report to the FDA.

Send a Letter to the American Academy of Dermatology

TAKE ACTION! Download this template letter to write to the President of the American Academy of Dermatology. Share your story. Template letter credit: PCH Films. Learn more here.

Become a TSW advocate!

ITSAN Board Members, Jodie Ohr and Kelly Barta present “Advocating for Change” a follow-up webinar to their presentation on advocacy at ITSAN’s virtual SPARK Patient Conference.

Click to connect to topics from “Advocating for Change.”

Share your story.

Sharing your story can help prevent TSW and offer hope to others. Connect with ITSAN to help raise TSW awareness. Share your TSW story here.

Share medical research with your doctor.

As a TSW patient or caregiver you are an expert. You have individual needs that deserve appropriate care. Help your medical provider learn more about TSW Syndrome.

Below are resources on TSW Syndrome that may be helpful to share with your doctor:

Share your TSW experience with your doctor.

Click below for steps on how to write a letter to your doctor – past or present – to help raise TSW awareness.

Write to your doctor.

Speaking up about your TSW experience is a way to help prevent TSW Syndrome. See below for steps to write to your doctor.

1. Gather a few of your TSW photos (3-5).

2. Write down your doctors’ names, office emails addresses, and physical addresses all in one place. Send the letter to the doctor’s practice rather than to a specific person.

3. Access a template “Letter to Your Doctor” in ITSAN’s Advocacy Kit located in the Files section of ITSAN’s Private Facebook Support Group here. Another template is available from Scratch That UK, an “online information resource, community and awareness campaign” for TSW. Find their “Guide to Writing to Your MP About TSW” here.

  • Edit either letter to reflect your story – your own voice, details, pictures, etc. The templates are simply starting points to get going.
  • The doctor’s letter template is written in an unemotional tone so as to not be off-putting – it will get them to hear you and consider your message.

4. Mail it off AND send via email if you can. Email can easily be forwarded to other physicians. Mail will get it into their hands and keep it on their desks to revisit. Send both if you can, but send at least one.

“You have a powerful story and there are thousands if not millions of people who need you to speak up…believe me, I’ve gone through my periods of fury, about what happened to me, all of the loss in my life, the loss in other peoples’ lives, but if that’s all you bring to the table, that doesn’t get very far…you have to be able to channel that in a way that’s productive and when you start seeing the change happening, it is so rewarding. Because it’s not just for you, it’s for countless people. You are changing the world.”

-Kelly Barta, ITSAN Executive Board Member and Past President

 “I remember the singular moment I became an activist. I’m downstairs, everyone else is sleeping peacefully and I’m furiously just itching, itching, scratching, scratching, this is in the early days so it was a couple of hours literally every single night when I was experiencing this and everyone else in the world was completely oblivious and I thought you know what, my doctor, doctors, have no idea what has been created in me and they don’t care because I haven’t cared enough to tell them, so how can I expect them to quit doing this to other patients if they don’t know that it’s actually happened. That’s when I realized there is no one else, it’s got to be us. We are the ones that can make a difference.”

-Jodie Ohr, ITSAN Executive Board member