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…
Enter Our Photo Contest!
It’s our first Ectodermal Dysplasias Awareness Month Photo Contest! Read the rules and download your sign today. Be creative and join the fun. It’s a great way to raise awareness.
Top 10* Most Common Ectodermal Dysplasias
* The numbers are taken from the National Foundation for Ectodermal Dysplasias (NFED) database and are not based on medical literature. There are more than 180 distinct types of ectodermal dysplasias cited in the literature. 1. Ectodermal Dysplasia, Specific Type is Unknown by the NFED – 3,168 People Almost half of the people on the NFED…
14 Things You Didn’t Know About Ectodermal Dysplasias
The first descriptions of clinical cases that might correspond to what we would now classify as ectodermal dysplasias date from 1792. Charles Darwin also cited cases of ectodermal dysplasia in a book he published in 1875. In 1929, Dr. A. A. Weech was the first to coin the term “ectodermal dysplasia” in the medical literature….
My Story
By Kaitlyn Squibb I was born in the spring of 1997, and before I was a year old, I was diagnosed with hypohidrotic ectodermal dysplasia. When I was just nine months old, I would get really high fevers from teething and ear infections and my parents couldn’t get the fevers to come down. My parents…
Keegan’s Dental Adventure – Part 3
(This story is part three of a three-part story. Read part one and part two.) By Lindsey James People are often surprised to learn that Keegan wears an upper denture, and I’m fairly certain no one has ever noticed that he has no lower teeth. He is able to speak clearly and doesn’t have much…
All I Want for Christmas is My Two Front Teeth
At Christmastime, I am reminded of many happy childhood traditions and memories. Some of my favorite memories involve snuggling up to watch Miracle on 34th Street, or leaping around the family room in a tutu along with The Nutcracker. (I will gleefully reenact this now, except without the tutu.) When I was growing up, we had…