Connecting to a Community Makes All the Difference

By Tina Moss

Tina Moss is a social worker, wife, and mother. She lives in Southern California with her husband. Their son is affected by ectodermal dysplasia and is a junior in college. Tina’s family has been active in the National Foundation for Ectodermal Dysplasias since 1992, volunteering as writers and fundraisers.

I’m staring at a picture of my son taken when he was about two years old. The sun shining through the nimbus of sparse blond hair on his head and the sweet smile on his lips give his face a cherubic look. His arms are raised in the air and he appears to be dancing. He’s my perfect, happy, dancing boy. That boy turned 21 a week ago, and while he’s lost his angelic look he retains the joyous spirit of the young boy in the picture.

That picture did not tell the whole story, though. Our son was diagnosed with hypohidrotic ectodermal dysplasia (HED) when he was 18 months old. In addition to his sparse hair, he lacked the ability to sweat, was missing teeth, and the ones he did have were misshapen and conical. He suffered from severe eczema, had allergies that caused his eyes to become red and puffy, and was frequently ill with sinus infections. The outward manifestations of this rare genetic condition often caused strangers to stare and on occasion ask intrusive questions. They wanted to know what was wrong with him or if he had cancer. I’m sad to say I never found a truly graceful way of responding.

I was angered by the attention our son’s appearance garnered and sad that as he grew he would probably have to endure the confusion, curiosity, or, worst of all, teasing his different appearance might inspire. I worried obsessively about how he would handle these things and how his father and I could help him successfully and happily navigate his way through life.

Shortly after our son was diagnosed we learned about an organization called the National Foundation for Ectodermal Dysplasias (NFED). We attended their annual Family Conference that happened to be taking place near our home in Los Angeles that year. I felt my worldview shift the minute I walked into the conference. Everywhere I turned I saw children who looked like my own child, so much so that they all could have been related. Same hair, facial features, teeth. Even their body types, thin and lanky, were similar. My skin tingled, my face grew hot, and I began to cry. For the first time as mother I felt like I belonged to a community.

On the second day of the conference, while our son was in daycare, my husband and I attended seminars on skincare, dental concerns, and social and emotional issues related to ectodermal dysplasias. We met other families and swapped stories about our experiences as parents of children who look different and have very specific health issues. Tips were exchanged on how to cope with rude comments and stares, as well as ways to deal with sensitive skin and the best way to cool down an overheated child. At the end of the day when my husband went to get our son out of daycare he couldn’t find him because for the first time in his life, our boy looked like all the other children in room.

The NFED has had a deeply positive affect on my husband, son and myself. Nineteen years after that first conference we can look at the happy, well-adjusted, productive man our son has become and give a lot of credit for his success to this remarkable organization. That first Family Conference was one of the most profound moments in the life of our family. Connecting to a community and having someone to call when we had questions or concerns or just needed an empathic ear to listen was invaluable to us. I wish every parent of a child with differences could experience that same sense of support and community. It can make all the difference.

This blog is featured as a part of Ectodermal Dysplasias Awareness Month which is celebrated in June. For more information, visit the National Foundation for Ectodermal Dysplasias’ web site at www.nfed.org.