“Wake up very dry and tight, burning and itching. Hard to move and it hurts. Hurts to open mouth to brush teeth. Hurts to take off clothes and go to the bathroom.”
These lines are from Kelly Barta’s journal entries, chronicling the moments she felt hopeless with utter darkness, coupled with the new reality that brought pain in every movement she made. Even through that pain, she knew how useful her story would be to thousands of others going through the same experience, which is why she wrote a book detailing her own journey, titled “To Eczema, With Love.”
Waking up in excruciating pain was not how Barta imagined her life, but it is how she started her day, every day, for nearly two years – not in the comfort of a hospital, but rather, in her own home.
The reason? She was turned away by the doctors who prescribed the medication that left her in this condition, with nowhere to turn for help.
Topical Steroid Withdrawal (TSW) is, “a debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema,” according to the International Topical Steroid Awareness Network (ITSAN) website. It’s often characterized by, “red, itchy, burning skin that can appear after ceasing steroid treatments, or even in between treatments.”
Barta has been battling eczema her whole life, the same way everyone else with the inflammatory skin condition does – from trying every lotion and cream available on the market, to over-the-counter hydrocortisone cream, to even making her own concoction of organic creams at home.
None of Barta’s treatments worked as well as the topical steroid cream that her dermatologist prescribed when her eczema wouldn’t leave her alone. Finally, after searching for a better alternative when cream after cream would result in more flare-ups, she found a miracle cream that would take her worries away – or so she thought.
“I could eat what I wanted, do what I wanted, as long as I had my tube of steroid [cream],” she said. “I just put it on, and within a couple of days, my skin was okay.”
Barta said that although she was used to dealing with the itch and redness that came with the usual eczema flare, it was never this bad. When she stopped using the topical steroid cream after seeing clearer skin, her whole body broke out in a severe rash she’d never experienced before.
“Within two days of stopping steroids, my skin started freaking out, it was burning everywhere,” she said. “I started having this bone-deep, insane itch, and I couldn’t itch it hard enough.”
After noticing her skin getting worse, Barta told her doctor of her reaction. The doctor’s response shocked her, and influenced her to look into why thousands of others with the same reaction are left to fend for themselves, without the support of their doctors.
“I talked to my doctor about it, and he was like ‘No, no, don’t try to figure it out, you’re going to drive yourself crazy,’” Barta said. “‘This is a hereditary disease; you’re going to have to use steroids for the rest of your life.’”
Barta was not the only one met with this kind of response from her healthcare providers.
“When patients see their doctors and … explain what they are experiencing after treatment, they are met with dismissal, condescension, or even medical coercion or gaslighting,” Barta wrote in her book.
She published “To Eczema, With Love” in 2022 to give hope to people living with TSW and inspire them to keep fighting.
Barta currently serves as the president and executive director of the Coalition of Skin Diseases (CSD), a parent organization of several of the nation’s skin-related patient groups which advocates for more than 84 million Americans affected by skin conditions.
“And by that point I realized that I can’t go back to my old life,” Barta said. “There’s tens of thousands of us who are going through this and nobody’s doing anything about it. I can’t just walk away until I see certain things start to change.”
ITSAN appointed her as a board member in 2016. Ever since, Barta has met with lawmakers, dermatologists and the FDA to help change the attitudes that doctors and corporations have regarding patients’ concerns.
Much of Barta’s advocacy within ITSAN includes working with the Centers for Disease Control to establish a diagnostic code that doctors can use for TSW. She said having this code implemented will make it easier for doctors to recognize the symptoms in patients.
Her advocacy includes several meetings with the FDA to petition for label changes on prescription topical steroid creams. Much of the problem regarding TSW, Barta said, is the lack of clarity on drug labels on how much and for how long the drug should be used on the skin, resulting in doctors overprescribing the length of treatment.
“I started realizing it’s gonna take us connecting to the right people in leadership to get everybody around the table together to solve this problem,” Barta said. “Everything we see in our world all started in the imagination, and it took a group of people who got together to make it happen.”
Kathryn Tullos, the president of ITSAN and a registered nurse in Houston, had a similar experience with healthcare providers when her four-year-old son’s pediatrician said the red flare affecting his whole-body was “just eczema.”
“To me, it’s very easy to see what my son was going through, and what he wasn’t,” Tullos said. “His baseline wasn’t head-to-toe on fire, his baseline was small patches of eczema here and there.”
One mother named Diana Graniela even had a medical neglect investigation opened on her by the Florida Department of Children and Families (DCF) when she refused the treatment plan the hospital was giving to her son, knowing it would make his condition worse. Instead of getting a patient advocate like the hospital promised, she got ambushed with questions in her son’s hospital room.
“I had the hospital against me, I had DCF against me, I had everyone against me,” Graniela said. “The hospital was calling other hospitals to warn them about me. I was essentially red-flagged.”
Barta understood Graniela’s frustrations. It wasn’t easy for Barta, especially when she was still in the recovery phases of TSW and battling with the toll being bedridden for over a year took on her mental health.
Even though Barta, as well as many others going through TSW, have taken on many silent battles cooped in their bedrooms while many turned a blind eye, her faith still perseveres. Both Graniela and Tullos said they are grateful Barta advocates for people in their circumstances.
To learn more about TSW and Barta’s work, visit itsan.org.
The Everyday Heroes project is a partnership between Fresh Take Georgia, Atlanta Journal-Constitution and other newsrooms in Georgia.
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