Being the parents of a child with eczema is an endless battle. This is Bailey's eczema journey.
Published On: Oct 22, 2020
Last Updated On: Feb 16, 2021
The thought had crossed 19-year-old Hala Idris’s mind that there were probably hundreds — maybe even thousands — of other students at Virginia Commonwealth University (VCU) who are living with atopic dermatitis (AD).
But because the condition is stigmatized, and many people try to cover up or hide their flare-ups, how would anyone know for sure if the student sitting two rows down also feels frustrated or self-conscious about their skin.n.(opens in a new tab)
“Sometimes you do feel like nobody else has to deal with this,” Idris said. “That’s why I try to look at NEA’s Instagram hashtag #unhideECZEMA every now and then to see what other people are posting.
“It’s helped me a lot and made me realize that I wanted to get more involved in the community to help advocate and spread awareness. So that’s what ultimately led me to become a NEA Community Ambassador.”
NEA Ambassadors offers people with eczema and their loved ones meaningful opportunities to raise awareness, advance research, advocate for patients and engage with others in the eczema community.
To qualify, Idris had to pass an educational curriculum focused on eczema, NEA and her chosen area of ambassadorship. She opted to join all three NEA Ambassadors groups: advocacy, community outreach and research. After she was accepted into the program, she gained access to a social networking platform where she interacts with fellow Ambassadors while receiving helpful resources and community updates.
“I started reading what people were writing on the Community Outreach Ambassadors discussion board and thought, ‘Wow, this is really cool!’ It was great to meet other people who are going through the same struggles.
“I think it’s amazing what NEA is doing with this program and how it’s an opportunity to get to know other people in the eczema community so that we can see we’re not alone,” she said.
NEA Community Outreach Ambassadors work with other eczema community members to provide opportunities for support, connection and shared experiences.
This can be done in a number of ways, from organizing a local awareness and/or fundraising event, to leading a NEA meetup, to sharing their eczema journey in a video or written essay for NEA’s blog and magazine.
Having the chance to host an awareness/fundraising event at VCU appealed to Idris, who was eager to spread awareness and possibly make some new eczema buddies in the process.
“I wanted other students with eczema to know that NEA exists and there are all these resources available to them like NEA Ambassadors, so I reserved a space to host an event at my school,” she said.
NEA staff were happy to assist Idris throughout every step of the planning process, equipping her with the information, resources and supplies she needed to host a successful fundraising and awareness event at VCU on Sept. 18 that met her school’s protocols for social distancing.
“I made a presentation explaining what eczema is, what NEA’s all about and included some information about their Seal of Acceptance program, their People Engaged in Eczema Research (PEER) program and how to get involved in clinical trials,” she said.
“I wanted to make sure they left with lots of valuable information about how NEA can help and how we all can be more active in helping advance eczema research.”
“It was definitely a success,” she added. “I had a good amount of people show up. Some of them did have eczema. Some of them said they had a friend with eczema and wanted to pass this information along to someone else.
“We even had a quiz at the end where I asked them questions, and they got to pick out NEA stickers, badges and wrist bands as little prizes. It was fun! I think everyone had a good time, and they seemed really excited to learn.”
Idris hopes to host additional eczema events at VCU — in person, if possible, but also in a virtual format to ensure that even more people are able to attend.
“I want to make sure that those who can make it, whether in person or virtually, are able to interact and ask questions,” she said. “I also want it to be as casual as possible so that people feel comfortable sharing what they have to say.”
Idris’s own journey with eczema is what led to her decision to pursue a biology major with a chemistry minor. She’s on the pre-med track with aspirations to go into dermatological research.
“I was diagnosed with atopic dermatitis and asthma at 4 years old,” Idris said. “At age 7, I developed severe allergies to lots of food and had to cut many things out of my diet. I’ve dealt with very bad rashes and was sometimes hospitalized. It was a nightmare. My eczema has improved as I’ve gotten older, but I still have flare-ups, and I’m still dealing with the physical and emotional scars.”
She credits the support from her fellow NEA Ambassadors for helping her heal. “That alone makes all the difference,” she explained.
“Anyone who suffers with eczema would benefit from this program. It’s a really positive, encouraging environment. NEA is good about updating you on what’s going on in the eczema community and lets you know about any upcoming events that you might want to attend. I don’t see why anyone wouldn’t want to be a part of NEA Ambassadors. The only thing I regret is not joining sooner.”