In 2014, Ashley Ann Lora had one of the worst eczema flare-ups of her adult life. Diagnosed with the chronic skin condition as a baby, she thought she’d already been through it all and knew what worked to get by. But the topical steroid she had relied on for years was no longer making a difference.
“I went into a panic,” says Lora. “I had no idea what to do. And that's when I Googled eczema for the first time.”
That’s where she first found the National Eczema Association (NEA) and learned there were 31 million Americans living with the same condition she had. She found a treasure trove of information, but more importantly, she found community.
“I was like, ‘Where have these people been all of my life?’” she says.
Through the NEA she discovered ITSAN.org, an organization that educates and advocates for people going through topical steroid withdrawal. And she started reading blogs of people going through similar journeys to hers.
“Realizing that there were other people who looked like me, who experienced the same symptoms as me, who were still thriving, that was really important because I never knew that I could have a normal life while living with eczema,” says Lora.
Today, Lora is paying it forward as a strong voice helping others find their footing online. Through her social media presence and eczema advocacy platform, she raises awareness and shows up for others living with the condition. She and others who have created webs of support online share their experiences and offer tips for making your own connections.
Finding Your People Online
When you have eczema, finding a treatment that addresses your symptoms is understandably your main focus. But there can also be great relief in seeking out and talking to others who get it.
But even though the internet is full of advice, not all of it is reliable. Lora recommends starting with established organizations and medically reviewed resources to look into their support communities before branching out. These sources can help you understand the basics like what eczema is, what triggers it, and what treatments are available.
From there, you can explore more personal content like blogs, videos, and forums. The key is to use expert-backed information as your foundation and personal stories as a way to learn how others apply that information in their own lives.
Lynell Doyle has lived with eczema her whole life, but it wasn’t until her oldest son was diagnosed that she witnessed the power of community. Being surrounded by others who understood the eczema experience was not only eye-opening, but it kicked off a new level of eczema management.
“For him, at 9 years old was the first time that he had been in the presence of a group of people who had experienced the same thing, and that helped him know he wasn’t alone,” says Doyle.
It also showed them both that there were places they could go for help. Through what they gleaned from the people they talked to they began putting together new resources.
“We call it our eczema toolbox of different treatments, different physicians, and different things that we can use to get him through and actually survive and thrive,” says Doyle. “He's thriving with eczema.”
Social media platforms, support groups, and even comment sections can become informal communities. People share product recommendations, treatment experiences, and day-to-day coping strategies.
Maddie Howard has lived with eczema and allergies since childhood. Her experience with online community support began with her food allergy journey. Through that tight-knit group she met people who also lived with eczema. She’s noticed that when you share a common bond like allergies or eczema, connection happens quickly and easily.
“Right away they’re taking you in, giving you suggestions, supporting you,” says Howard. “When people talk about having a flare-up, everyone's always there to commiserate and then hype you up to encourage you to keep on going and keep on trying.”
The Value of Shared Experience
One of the biggest advantages of an online community is access to other people’s lived experience of eczema. Doctors are your best source for medical guidance, but people living with eczema can give you real-life perspective.
Lora hosts her own online support groups and says she’s met a lot of parents caring for kids with eczema. Many are navigating fear and anxiety about what to do next for their kids.
“There's a lot of like, ‘I'm so afraid of starting my kid on this treatment. What was your experience like?’” says Lora. “And over and over I see the community building each other up and encouraging others with hope.”
Howard turned to social media when she developed a new type of eczema on her hands. By searching online, she found others describing the same symptoms, along with advice on what helped and what didn’t. Even reading through comment sections gave her helpful paths to follow.
“I can tell my friends and my family what it's like to have eczema, what it's like to have food allergies, but they won't really know unless they're living it. And so, just having someone around who gets it and you don't have to explain yourself to is such a relief.”
Navigating Clinical Trials and New Treatments
Online communities can also open doors to opportunities you might not find otherwise, including clinical trials. People often share their experiences, what to expect, and how to get involved with clinical trials. From there, you can follow up with reputable trial registries or talk to your doctor about whether a specific study might be right for you.
Doyle points out that being connected to a broader network gives you access to information beyond your local area. Through advocacy groups and online connections, she’s learned about studies and treatments happening across the country and even internationally.
“By connecting with these other agencies, I'm able to find out about studies and information that's not just in my area or my city or my state, but nationally and even globally,” says Doyle.
Calista Oyerly, who has had eczema since birth, had a similar experience using online resources to explore alternative approaches to managing her symptoms. Articles, social media posts, and podcasts introduced her to new ideas, which she then researched further and adapted to her own life.
“I think it helped me not give up on finding treatment and finding a solution,” says Oyerly.
Turning Connection Into Advocacy
For many people, finding community is just the beginning. Doyle’s search for answers for her son eventually led her to become deeply involved in organizations.
“The NEA expos are pretty powerful,” she says. “Near the end of our first one, my son gripped my hand and asked me, ‘So what are you going to do?’ And now I’m a board member and ambassador. And now that he’s old enough, so is he.”
Online connections can lead to community organizing, advocacy, public policy change, real life community groups, in-person events, and connections with other families navigating eczema.
Eczema advocacy is now Lora’s career. She shares her story through social media and her website, providing guidance and encouragement she wishes she’d had from the beginning.
“I really thought I was just going to have to struggle and suffer for the rest of my life,” says Lora. “It wasn't until I saw other people showing off their skin even though it's flared up and saw them going out, having careers, and doing their life that I realized it was all possible while living with eczema. And that's what I try to do is just show people that eczema is a part of who we are, who I am. But it is not our entire story.”
