CARTERSVILLE, Ga. — A Cartersville woman said using steroid cream has led to a lifetime of pain and skin issues.
Natalie Merchant said she wants to help raise awareness for TSW, or Topical Steroid Withdrawal.
“It's a bone deep itch," she said of her symptoms. "You’ll go raw. To wash your hands, it’s like lemon juice in a cut."
Merchant said she lives in constant pain.
"There are times when I would just give up," she said. "I'd go lie on the bathroom floor and just cry like I'm not going to be able to sleep tonight. Why fight it? Why keep trying?”
Merchant said she was diagnosed with eczema when she was a few months old. She was prescribed topical steroids, which according to the Mayo Clinic, are typically used to help reduce swelling and skin irritation.
Milder steroid creams can even be found over-the-counter. But as she stopped using it, her flares just got worse.
“Eventually, no amount of cream was enough," she said. "We tried everything under the sun. Dermatologists, naturopaths, oatmeal baths, went gluten free for years just to see if that was it. I went sugar free for a while. You name it, we've given it a shot.”
Photos | Georgia woman has experienced lifetime of pain after using steroid cream
She said her doctors continued to insist it was eczema. But some research led her to the discovery of TSW.
“This is like word for word exactly what I'm struggling with," she said. "We've been trying to treat eczema and it was never eczema. It was just the result of using these creams. Your body's just addicted, right? So now it's just withdrawing.”
Dr. Taz Bhatia, a board certified integrative medicine physician based in Atlanta, said TSW is often overlooked in the medical community.
“TSW is actually something we've seen in our practices and it is real," Bhatia said. "As you start to take the steroid away, it's like the entire immune system goes haywire. Science and research is not caught up to where the patient is."
Bhatia said patients with TSW are often misdiagnosed.
"I've met so many patients dealing with TSW that have been told that they were going crazy or its in their head," said.
Bhatia called that medical gaslighting, and said it’s especially prevalent in women's health and pediatrics.
"Symptoms are dismissed and they're not taken seriously, it really leads to misdiagnoses," she said. "As a patient, which you've got to do in a very fractured health care system, currently, is really be your own advocate.”
That’s what Merchant has done. In her research, she came across a treatment called cold atmospheric plasma therapy, which she said is a process that exposes the skin to ionizes gas.
However, it’s not available in the United States.
Merchant started an online fundraiser to cover her trip to Thailand to receive the treatment. While she travels, she shares her journey on social media to bring more attention to TSW.
“I've been told my whole life it's just eczema, it's not even a thing, there's not even a cure," she said. "I'm really hoping this raises a lot of awareness.”