By Alanna F. Bree, M.D. Pediatric Dermatologist, A Children’s House for Pediatric Dermatology It has been an honor and a privilege to volunteer as a member and a secretary of the Scientific Advisory Council for the NFED. The organization is a true blessing to so many. They not only do an excellent job of supporting and advocating…
Finding Strength in Moments of Pain
By Acacia Hathaway When my daughter, Ella, is older I will tell her the heart touching story of her first birthday and why I chose butterflies as her theme. She will begin to understand that she was strong from the beginning. She has taught me what strength really is. When Ella was almost a year…
Be a Genie for the NFED
All of us at some time or another have wished for a genie. Rub the magic lamp and get three wishes. How easy would that be! Sadly enough, this doesn’t happen. Why is that? Could it be because we no longer believe in magic? What if we could borrow the magic lamp for even just…
Come Out and Welcome In
Late one evening while browsing my email, I discovered that someone had sent me a message using the “Contact Me” form on my blog, EEC Chick. So happy to find your blog and that you have dedicated time to help others with EEC. My wife and I just found last week she is carrying a…
My Smile – 23 Years in the Making
By Jacob Moss On November 3, 2014, I completed my dental implant process. For the first time in my life I had a “permanent” set of teeth. As a 23-year-old man with hypohidrotic ectodermal dysplasia, permanent teeth had always been an abstract concept to me. The process was long and, at times, difficult; but now…
Déjà Vu All Over Again
By Mary K. Richter NFED Founder and Executive Director 1981-2010 While we often hope for or look for change or something better, time suggests that much in life doesn’t really change all that much. Take for instance the mom who works hard to teach her children to put away their toys and possessions. Chances are…
10* More Rare Ectodermal Dysplasias
All of the 180+ different types of ectodermal dysplasias are considered “rare” because they affect less than 200,000 people in the United States. But some of the syndromes are much more rare than others. Here is a sampling of 10 that fall into that latter category. Book’s Syndrome – 1 person Signs and symptoms include failure of premolars…
Be Happy That You Are You
You are who you are for a reason. You’re part of an intricate plan. Be happy that you are you. We certainly are! I remember as I was growing up thinking, “Gee, I wish I was more athletic, prettier or smarter.” Even now, I wish I was shorter so I could wear those sexy, stiletto…