Ask the ADvocate Series: Sarah Hackley

We asked our advocate Sarah Hackley some questions pertaining to life with atopic eczema. Take a look at her answers and perspective below regarding daily life caring for a child with eczema, awareness of the condition and ways to recognize and partake in eczema awareness month.

What advice do you have for telling others (family/friends/coworkers/peers) about your child's diagnosis of atopic dermatitis?

Be as upfront and factual as possible when dealing with people who need to know, such as secondary caregivers, teachers, or grandparents. At first, they may not understand the importance of avoiding triggers. Without education, many people think eczema “isn’t that big of a deal.” By being upfront and factual, you’re more likely to get them to really hear you and work with you to help protect your child and take care of his or her skin. (You’re also more likely to avoid receiving gifts your child can’t use, but that’s for another post. Stay tuned!)

What is something that only caregivers of a child/children with atopic dermatitis will understand?

It can be incredibly frustrating to try and treat a child’s eczema, especially a young child. Babies and toddlers suffering with uncontrolled atopic dermatitis often can’t sleep well due to itchy or painful skin. They also scratch, which makes everything worse. Frequent scratching also can cause severe irritation and even infection if not treated right away. (And those baby mittens do not stay on overnight. Trust me.) So, even though most people who have never dealt with eczema may consider it to me a minor inconvenience, it can wreak real havoc in a household, especially when young children are involved. When babies and toddlers can’t sleep, no one gets any sleep. And when they’re in pain, parents and caregivers suffer, too.

What do you wish people knew about your atopic dermatitis/eczema (or your child's atopic dermatitis/eczema)?

Atopic dermatitis is not always an easy-to-treat condition. Many people who have never had any experience with eczema or who have had brief flares of a simpler case may not understand the lengths some people have to go through to truly calm their skin in the short and long-term. We recently spent months of doctors’ appointments and hundreds of dollars on prescriptions trying to get a particularly bad flare of my daughter’s under control. When an eczema flare gets really bad, it can trigger other skin infections and conditions, too. Then, you have to get all of those additional issues under control before you can strengthen the skin enough that it is no longer easily irritated.

Do you have any ideas or creative ways to celebrate Eczema Awareness Month?

If someone is comfortable sharing photos of his or her skin that could be a very powerful way to spread awareness. We live in a highly visual society, and photos can make a long-lasting impression. Of course, not everyone is comfortable doing that. Those who don’t want to share photos may wish to post a status update or tweet about a problem that those with atopic dermatitis might live with every day that other people wouldn’t necessarily think of or immediately. Perhaps something like, “At the grocery store, trying to find a soap that doesn’t trigger my kid. Ten down, and no options, yet.”