NEA and PeDRA wrap up their Eczema Counts project with new priorities for eczema research.
Published On: Sep 26, 2022
Last Updated On: Sep 26, 2022
How do you feel? This is a common yet daunting question that lingers over people who suffer, like me, from a chronic skin condition. Most of the time I say, “I’m fine,” when in reality I’m not.
Ever since I was a baby, eczema has disrupted the natural flow of my life. I’ve grown up with my insecurities controlling me, as every thought and decision has always revolved around my skin. It’s exhausting to endure endless appointments with general practitioners, dermatologists and allergy specialists, only to end up more confused than when I first started looking for help.
While trying to find answers, often bouncing from doctor to doctor, topical steroids became a fixed part of my eczema experience. Over time, my reliance on topical steroids led me to the unexpected side-effects of a skin condition known as topical steroid withdrawal (TSW). My experience with TSW became more consuming and transformative than my original battle with eczema ever was; this battle with TSW has changed my life and my family’s life forever.
On February 14, 2021, my flares started changing. The sensation felt different than my previous skin rashes. I remember the burning and spreading of the fiery rash all over parts of my body that my eczema had previously never affected. It felt like my body was turning itself inside out.
In a moment of desperation, I started looking for help online and found the International Topical Steroid Awareness Network (ITSAN.org); while reading the stories of other people like me, I realized I was experiencing the very same TSW symptoms. After making this discovery, my family and I decided it would be best, as hard as it would be, to start the journey into healing without any medications.
Sometimes words are not enough to express the intense feelings a family goes through together during a time of crisis; this experience led to the creation of “My Life During Topical Steroid Withdrawal.”
My friends at CutFocus Production Company presented me with the opportunity to show the world what this debilitating condition looks like from an insider’s perspective. Our goal with this film was to portray all the aspects of life that TSW can affect. Even though my story is about fighting TSW specifically, we wanted to make this video relatable to anyone.
My hope with this film is that we’re able to inspire people who are fighting TSW to step out from the darkness, feel supported and realize they’re not in this fight alone: we’re with you.