On October 1st, I attended the National Eczema Association (NEA) One-Day Forum in New York City at Mount Sinai. The day was filled with information, emotions and connection with one another in the eczema community.
As a person who does not have eczema, but one who manages a community for those suffering from atopic dermatitis (the most common form of eczema; the two terms are often used interchangeably), my experience at the forum was filled with listening and learning.
My ultimate ambition is to utilize my learnings from the conference to better understand the eczema community so that I can ensure that AtopicDermatitis.net continues to be a space of connection and support for one another.
Below are my three main takeaways from the NEA One-Day Forum!
#1 There is no “cure” for eczema, but know that someone, somewhere is working hard to find one.
As the NEA CEO, Julie Block said in her opening speech: “science is coming”. The morning full of presentations by Mark Lebwohl, MD and Emma Guttman, MD showed just that. Dr. Lebwohl’s overview of the past decade in advances for eczema treatment showed impressive treatment results in psoriasis patients. He discussed how elements of those treatments are being studied so that they may soon become realities for eczema patients.
Dr. Guttman talked about the perfect drug profile for AD patients, and how personalized medicine could be something of the future. She explained how new drugs like dupilumab are delivering promising results that are helping doctors to study more through clinical trials. “This is a very exciting time for AD” said Dr. Guttman, and doctors are “achieving new things” on “the path for better treatments”.
#2 Eczema is a legitimate skin condition, and it’s about time people recognize that.
It’s is not just itchy skin or another rash. Eczema is a condition that has had a tremendous impact on the lives of sufferers in so many ways. Patients and caregivers at the forum shared experiences with leaving jobs, difficulties at school, and missing out on things many of those outside of the community might take for granted.
Experiences shared by several sufferers revealed the difficulty they face in trying to express the legitimacy of their condition to others. One attendee said that her son’s school is refusing to recognize it as a reason for his absence. A speaker referenced her struggles of being denied drugs that can help her, as she is in her third appeal with an insurance company. The systemic denial of eczema as a serious condition at various levels of a person’s experiences can certainly explain why eczema often does not get the acknowledgement it deserves.
#3 Nobody should have to fight this battle alone.
One of the most touching parts of the conference for me was watching people from all walks of the eczema community begin to support and connect with one another throughout the day. From watching heads nod while listening to one another, to mingling during lunch, to sharing tissues for when the tearful moments came in break out groups at the end of the day.
So many attendees said they felt alone in their journey, and said they were so grateful to attend an event where they could be among others who understand them. Hearing that “it gets better” and to “not let your eczema define you” from someone else who knows what it’s like to live with eczema is a sentiment that simply cannot be replaced.
The conference highlighted to me that sharing your stories and struggles, asking questions and helping one another in this journey is so important for navigating the road ahead. Being part of a community where there is a sense of belonging, and others who can relate and validate your experiences is so special. Until there is a cure, I hope that all eczema sufferers and caregivers will find a place like this.