Living With Eczema: Raising Awareness and Support For Atopic Dermatitis

We’re all different, and at the same time, we’re all special too.  This is what I tell my daughter Bella every time she feels sad because she can’t eat cake when she goes to a birthday party, or go to the pool with her friends.

You see, when Bella was 20 months old, she broke into an inexplicable rash that covered 90% of her tiny body. Baffled, we took her to the doctor, and we were even more distressed when we had our diagnosis: our beautiful little girl was afflicted with Atopic Dermatitis, or eczema.

To say that we tried everything is a gross understatement. My husband and I spent months looking for doctors and going through a confusing, frustrating stream of treatments, an endless assortment of creams and ointments, and hours online reading page after page on anything and everything related to eczema.

Like many other parents, before Bella’s diagnosis we didn’t know that Atopic dermatitis could be this severe, this stress-inducing, this challenging and at times simply devastating. We had heard parents talk about their children with eczema, and we’d dismissed it as a rash that would surely disappear after a few rounds of topical treatments.  It was only when we lived through it, witnessed Bella’s discomfort, and were exposed to so many other children through chat rooms, meetings, doctors’ waiting rooms, and online support and awareness groups, that we realized that sometimes, some of the cases are just so severe that nothing seems to help.

The complications didn’t end at the diagnosis.  At the beginning of the onset, my daughter spent months of suffering through her condition, while we tried every cream and lotion that you can imagine. But after much trial and error and very little progress, we took her to the National Jewish Hospital in Denver, where we spent three weeks treating her skin and running what seemed like a million tests. There we learned that Bella also has severe allergic reactions to dairy, nuts, eggs, soy, wheat and fish.  And just to make sure we were kept on our toes, she’s allergic to cats and dust mites, which happen to be just about everywhere. Sigh.

Our world changed overnight, and dramatically at that.  We had a healthy, beautiful baby girl and I had no worries. I loved to improvise, to plan last-minute treks and outings, and rarely with more planning than a diaper bag.  Bella’s condition changed all that, in a way that has made me into a mini version of a road warrior.  Having a child with Atopic Dermatitis means that you have to take a few extra precautions before you leave the house. Little things that I took for granted, like grabbing a light sweater for her in case it was a few degrees below sunny Florida’s usual 80s, now need a couple of small tweaks.  I need to prepare all her foods, because of her allergies.  I check the weather, because heat and humidity can bring about a breakout, but even if that doesn’t happen, they are enough to make her miserable. When we go to a friend or relative’s house, I need to ask if there are pets. It was a little challenging for our family to fall into the new routines, to get our very loving and very willing older son Sebastian to understand his sister’s condition and embrace the adjustments to our lifestyles.  And we did all of this, and do it every single day with love, dedication and a smile: we have one another, we have a loving and supportive extended family and we have friends in our local community, and in the online community, who are living, dealing with and striving to thrive as families with eczema.

…this means that approximately one in every three children with eczema/Atopic Dermatitis has a moderate to severe version of the disease. This is not an insignificant amount of people with whom to connect and exchange solutions.

You are not alone. One thing that helps (and tremendously at that) are the support groups.  It’s not a stretch to say that I signed up for just about every single support and parent group that I came across, and for the first time in years I feel that we were not alone on this journey.  The internet shrank distances and dropped me into a tight network of parents who so generously share an incredible wealth of wisdom, resources and information on what has educated them, and empowered them provide comfort, guidance and, in all honesty, sanity for those of us who recently joined the ranks as parents of children with Atopic Dermatitis, a company into which I was painfully introduced, but from which my family and I have emerged wiser, stronger, and armed with ideas for solutions and treatments that we are glad to share with anyone who needs it.

Eczema is so much more common than we ever imagine.  Through our extensive research we discovered that in the United States there are 31.6 million people with eczema, and at least 17.8 million with moderate to severe eczema or Atopic Dermatitis. This means that approximately one in every three children with eczema/Atopic Dermatitis has a moderate to severe version of the disease. This is not an insignificant amount of people with whom to connect and exchange solutions.