By Randi Walker I can still remember walking in to our first NFED Family Conference in Colorado Springs, Colo. Weston, our only child at the time, was three years old. Those first three years were quite difficult. Weston had experienced several symptoms of x-linked hypohidrotic ectodermal dysplasia (XLHED), but his doctors had never heard of…
Summer Fun
Whew! Hot weather has arrived in the Midwest. We are enjoying a beautiful sunny day, bright sunshine and blue skies but it’s also hot and very humid. Hmmm. It might not be such a beautiful day if you or your kids don’t sweat. I remember the days when my kids would come in from outside, all hot…
Understanding Genetics
By Pilar L. Magoulas. M.S., C.G.C. All ectodermal dysplasias are heritable or genetic disorders, which means that they can be inherited or passed on to children. However, it is possible for a child to be the first person in his or her family to be affected by an ectodermal dysplasia. Chromosomes and Genes The body…
Welcome Home!
By Sue Kluzek I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!…
Similar, But Unique
My name is Aaron Aselage. My father, brother, and of course, myself, all have ectodermal dysplasia. To say we had it rough as children is an understatement. Each of us had similar issues, but we’re also unique. For instance, my brother had a more intensive surgery than myself in terms of cleft palate and dental work,…
Involvement: Get started today!
By Terri Matus, Grandma of Allyson Kelso, Member, Family Support Council and Co-Chair for Rally for Ally There are many reasons to volunteer one’s time for an organization. The obvious one is to be helpful and to assist others in order to enhance the programs provided by the organization, namely, the NFED. I like to think…
We are Family! My Brothers, Sisters and Me!
By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold. We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…
Ectodermal Dysplasias: How Nails Can Be Affected
The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria. If…