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ITSAN raises awareness of Topical Steroid Withdrawal Syndrome and supports all affected individuals.

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Reva V is fundraising
Raising Awareness for TSW
Thank you for taking the time to read my story.

My name is Reva, and I am raising funds to generate awareness for a condition called "Topical Steroid Withdrawal" (TSW) that is personal to me.

For those who may not know, TSW is a debilitating condition that can occur after discontinuing long-term (and sometimes short-term) use of topical steroid creams, which are commonly prescribed for eczema and other skin conditions. While these medications can initially be helpful, they can cause the body to become dependent on them, leading to intense physical and emotional suffering.

For the longest time, I avoided topical steroid creams. However, during COVID, when medical access was limited, I developed a severe staph infection on my skin that was treated with a combination of antibiotics and highly potent topical steroids. At first, the steroid creams helped my skin but I didn’t realize how much they would hurt me in the long run. I used the creams sparingly as recommended by my physician, avoiding long-term use. However, when I stopped using them completely, I expected my skin to get better, but instead, it got worse—much worse—and my body went into withdrawal. My skin became red, swollen, itchy, and felt like it was burning all the time. I missed school because I was either too tired or in too much pain to attend. All of eighth grade, I had to stay home and I couldn't meet friends or family, except for my mom, dad, and brother at home. I was unable to do things that I love because of how badly my skin hurt everywhere. Some days, even getting out of bed was a challenge.

The community at ITSAN helped us understand the condition when dermatologists constantly denied that I had TSW. If not for ITSAN and the TSW warriors, I would not have been able to recover. I’m happy to share that I have been topical steroid-free for more than two years now!

I’m reaching out because dealing with TSW is really expensive, and the funds raised here will support those in need through ITSAN. Your support will help with -

Giving support to those who desperately need it

Providing education on TSW resources and management

Raising awareness about the TSW Syndrome (also known as “Topical Steroid Addiction” or “Red Skin Syndrome”)

Thank you so much for reading my story and for your willingness to help ITSAN. It really means a lot to me, my family, and other TSW warriors out there!

Any amount you can give would help raise awareness and assist someone suffering from TSW. Even just sharing the ITSAN page with your friends and family would make a significant difference.

Gratefully,

Reva

More stories of patients and resources - https://www.itsan.org/stories-and-photos/
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5 supporters
Michelle Li is fundraising
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
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54 supporters
Ben Brown is fundraising
Topical Steroid Withdrawal awareness and support
Over the past 2 and half years my Dad has gone through Topical Steroid Withdrawal. Please read the following blog to understand more about TSW and his journey: https://jembrown7.wixsite.com/top-steroid-withdraw

TSW Syndrome is thought to affect millions of people worldwide, and ITSAN is the only non-profit charity serving the global TSW Syndrome community.

Do you want to join me in making a difference? I'm raising money in aid of ITSAN and every donation will help. Thank you in advance for your contribution to this cause that means so much to me.

More information about ITSAN: The International Topical Steroid Awareness Network (ITSAN) is a nonprofit charity formed to raise awareness about a condition called Topical Steroid Withdrawal Syndrome. Our goal is prevention, early detection, and accurate diagnosis. You can find more information at itsan.org.
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26 supporters