Small Steps, Lasting Impact: My Journey as an Eczema Advocate

Today is a special day. While it isn’t technically my birthday, over the last few years I’ve come to cherish this date. Today marks three years since I walked onto a stage, butterflies in my stomach, heart racing, voice a little shaky as I shared with over a hundred strangers what it’s like to live with eczema. I had no idea that experience would forever change my life.

I walked off that stage feeling on fire, alive, passionate, and hungry to do more with the life I had been given. Slowly, my advocacy journey began.

Three years ago, I would never have dreamed that any of the following would describe me. Back then, stepping onto a stage felt daunting and unimaginable. Today, I know that advocacy is not about grand gestures. It is about persistence, compassion, and the belief that even the smallest actions can create lasting impact.

My journey has been slow and gradual: a phone call to a friend’s friend, a conversation with a neighbor’s sister across the globe, an interview with a Dermatology, P.A. to discuss the power of compassionate care (listen here), or coaching parents of a child struggling physically and emotionally at home or school. These moments may seem insignificant, but they matter. They give families space to understand their child more deeply and allow parents to feel seen in their own struggles which can feel isolating and overwhelming.

I have pushed myself out of my comfort zone in countless ways:

·      Speaking in front of strangers and experts with confidence and clarity.

·      Writing online and sharing personal experiences to offer tips, support, and validation to those who often feel alone, misunderstood, or dismissed.

·      Listening to people across the globe, from Canada and the USA, across the pond to the UK to Israel, or speaking up virtually on Capitol Hill to advocate for millions impacted by eczema.

It is humbling to travel to hospitals in remote areas, speaking alongside esteemed doctors and professors to share the patient perspective. I have shared what it is like to live with treatments that minimize pain and open doors to experiences I never thought possible, like learning to swim at thirty-eight (I wrote more about this here, how it connected to my skin journey and the freedom that came with it). I have reassured patients and parents hesitant about newer treatment like biologics or JAK inhibitors, worried about needles, side effects, and financial burdens, and how relief can be life-changing and even life-saving.

From lemonade stands and bake sales to conversations with neighbors who share their own stories, I have seen how advocacy connects us. I have shared hope that new treatments exist and encouraged families to seek care. Yet, it is heartbreaking to hear from parents whose children struggle not only with the visible signs of eczema but with the mental health burden, stigma, and isolation it brings. To know that young children have felt so hopeless they have considered ending their lives is devastating.

So now, while I pray my skin stays calm, when flares do show up, I try to find the silver lining. Whether it is turning an ignorant comment into an opportunity to educate or using my experience to inspire others, I remind myself that change begins with small actions. Those actions, those conversations, those moments of connection are what truly change the world.

This past summer, during a wonderful road trip through the Midwest, we kept passing a quote on a parking garage that spoke deeply to me. On our last day in Pittsburgh, before we headed to Chicago, we stopped to take the photo. I am so grateful we did because I knew one day I would have a reason to share it.

"Never believe that a few caring people can't change the world. For indeed, that is all who ever have." Margaret Mead

I want to take a moment to express my gratitude to Dr. Maxwell Sauder and Peter X. for their belief in me, for seeing the potential within me that was just waiting to be uncovered. They didn’t just recognize it; they extended an opportunity and encouraged me to take that first step forward. I am sincerely thankful for their support.