Running for Topical Steroid Withdrawal Research

Hi! I'm Michelle and I used to suffer from TSW. I'm running a half-marathon on May 7th, 2023 to fundraise for ITSAN in their initiative to build a TSW Patient Registry. Thank you so much for your support!! ♥️

What is Topical Steroid Withdrawal (TSW)?

TSW is an iatrogenic condition caused by the use of topical steroids to treat skin conditions such as eczema.

These are some of the most common physical TSW symptoms:

• Red, burning, stinging skin

• Intense, bone-deep itching

• Rashes spreading and developing in new areas of the body

• Excessive peeling and flaking skin

• Large areas of open skin with oozing exudate

The International Topical Steroid Awareness Network (ITSAN) is a nonprofit formed to raise awareness about TSW and to support the global TSW community as a resource. ITSAN is leading the initiative in building a TSW Patient Registry.

Why is this fundraiser so important to me? Who am I running for?

I went through TSW for over 5 years when I was 24 years old. The medication I was using to treat my eczema stopped working... I suffered from red, burning skin, insomnia, brain fog, bone-deep itch, cracks in my skin, and open oozy wounds that took weeks to heal. These symptoms affected my whole body, especially my face. Doing the most normal things like walking, showering and even eating was painful.

The physical symptoms made me feel like a different person. The constant pain and lack of sleep made me irritable and the depression of dealing with this for years made me want to end my life. I felt hopeless and I was afraid I would never get better… in fact, doctors told me I would be dealing with this for the rest of my life and had diagnosed me with severe eczema.

Today, this condition is not well-recognized by dermatologists; people going through TSW don’t get the support they need from medical professionals. The fundraiser will contribute to collecting the data points needed for dermatologists to create a patient profile so people going through TSW can get the medical support they need.

Why a half-marathon?

When it hurt to walk, all I wanted to do was run. I wanted to run away from all the pain and just feel the wind in my hair. This is a full-circle moment.

I’m running for the younger Michelle who felt like she wasn’t going to survive to see 30. I’m running to raise money for TSW Research so hopefully some day, people won’t have to suffer the way many of us have. Finally, I’m running for the people going through TSW today who feel the same hopelessness I did. I want to show them that they’ll get through it and that life will be way brighter than they ever thought was possible.

FAQ

What is a Patient Registry and how will this help people who have TSW?

A Patient Registry will help quantify the prevalence of TSW globally and to create a patient profile. The hope is that we can provide evidence and data that this condition exists. From there, more research can be done to determine the diagnosis criteria and treatment options.

If you’re interested in learning more, feel free to read ITSAN’s press release here:

I don’t have the means to donate, but I still want to help!

It would mean so much to me to share this fundraiser with your friends and family.

I’m so grateful for all the support around me. Thank you to everyone in my life that has shown me kindness and grace over these years… you were the ones who got me through this.

If you want to learn more about TSW, here are some online resources:

ITSAN website

Scratch That- Patient Advocacy Group

Preventable Documentary by Briana Banos

Michelle's Advocacy IG