To Eczema, With Love
Kelly Barta, 48, one of ITSAN's esteemed board members, has made quite a name for herself in the eczema community. *ITSAN stands for the International Topical Steroid Awareness Network - another champion for those of us going through topical steroid withdrawal (TSW).
Kelly's early days of eczema
Ever since she can remember, Kelly has dealt with eczema. And, like many of us, she was prescribed steroids to help assuage her skin woes. However, she found herself in much more trouble than she realized.
It wasn't just eczema anymore
Once the truth came out that she was not just dealing with eczema any longer but the agonizing diagnosis of TSW, she knew this journey would not be easy.
Staring down the road of TSW
"When I first discovered TSW, I experienced a sense of relief and horror all at the same time: Finally, I had answers to the mounting questions that my doctors weren't answering. But I was contemplating the road ahead, which was very scary. I knew my limits would be tested," Kelly began. "Not only me but also my family. At the time I began TSW, I thought it would all be over in a matter of a couple months, since I had made an effort to maintain a healthy lifestyle. But the road ended up being much longer and harder for me than I had imagined."
A changed perspective
Kelly's worldview completely changed during this process. Her entire world, essentially. Her future goals and where she thought she was headed no longer existed. She became more compassionate and opened her eyes to the responsibility to care for and advocate for herself. Even more, there needed to be a constant voice for those in suffering.
Along came eczema herpeticum
"Initially, I had thought I would be in and out of TSW and pick up my old life where I left off. But 4 years into recovery," Kelly explains, "I was exposed to the virus, eczema herpeticum (EH), which spread like wildfire over my whole body and nearly took my life. For months afterward, I was in a very dark place mentally. I didn't have any fight left in me."
Within that darkness grew a weariness, one that was hard to shake. However, there is nothing like sisterly love to stir something inside us.
She was tired of fighting
"One day, my sister Mandy called to check in with me and was talking about how the devil was trying hard to take us out but we should fight back with love and grace and kindness - she suggested we connect again soon so we could share how we were doing that in our day to day lives. I told her thanks, but I just didn't have it in me. To be honest, I didn't even know what to believe anymore. Mandy told me she would pray for me."
"That night," Kelly continues, "when I went to bed, something very significant took place; something that changed everything. It was like the dying coals inside my soul were stoked until sparks turned into flames and then the flames began to rage into a blazing fire. This fire was fueled by all of the pain, perplexity, and anger within me and the deep pain I felt for others who were also suffering like I was."
She began that fight by leading the way for us all. Door after door began opening in front of Kelly. She was meant for this.
Reflecting on how she navigated TSW
During her early moments in TSW, before her steadfast advocacy work, Kelly searched for answers. After 10 months of TSW, she was asked to be a part of a video that addressed how to navigate through seasons of suffering.
As she prepared for this, she listed points she wished to cover. It quickly dawned on her how important this list could be.
"If you fleshed out this list," Kelly said to herself, "it could be turned into a book."
She documented her journey
Once again, Kelly showed her true fighting colors as she documented her journey as a piece of hope and guidance - to create a map for us all one day.
"The year and a half I was bedridden granted me the opportunity to do a massive amount of research to add to my own experience. So I began to journal, little by little, and write about what I was discovering. I had to stop writing around 14 months in, because life got very dark for me, but continued journaling monthly to provide content to draw from when I was able to pick the work back up."
A memoir is born
Kelly shares her struggles and triumphs while creating her memoir, To Eczema, With Love.
"It was much harder than I expected to go back into the memories and re-live the pain - looking back through old pictures and journal entries was like walking through quicksand at times," Kelly admits. "When I began writing again in February of 2021, I thought I would be able to pump out the final chapters in a matter of weeks. I had no idea what I was in for!!"
It took her over a year to create the manuscript.
She debated sharing her heartbreak
"I additionally struggled a lot over which details to include about the ending of my 21-year marriage," Kelly attests. "Honestly, this was one of the most difficult and painful parts of writing the book for me. I knew this side of my story had to be told because so many people in the TSW community are facing the heartbreak of broken relationships."
Many of us lose out on relationships due to TSW - I know I did. Kelly's voice on the subject is paramount.
Kelly's future endeavors
Kelly is full of ideas she is ready to tackle and help implement.
"Currently, my mind is occupied with developing a TSW awareness campaign to create public pressure on policy makers and regulating agencies like the FDA. A public health advisory is imperative, and label changes on all steroid products must be clear so that consumers are aware of what they are using and how to use them safely. It will take our community rising to the challenge in a big and organized way - so stay posted!"
We need more humans like Kelly, charging forward with their passion, empathy, and intellect. It truly takes a special person to advocate in a moving and peaceful way while also standing firm in truth. I, for one, can not wait what she does next!
It's Eczema Awareness Month! Have you shared your eczema story on AtopicDermatitis.net?