The 50+ ectodermal dysplasias are recognized and named based on the specific combination of symptoms shown in affected individuals. The pattern of these features is important when a physician tries to make a formal diagnosis. In some types, teeth may be missing and nails may be defective, while in another type there may be missing…
Ectodermal dysplasias caused by mutations in the p63 gene include the following: AEC and EEC Research Overview By Maranke Koster, Ph.D.East Carolina University AEC and EEC are ectodermal dysplasias caused by mutations in the p63 gene. Although only AEC has historically been linked to the presence of skin erosion, data from the NFED’s Ectodermal Dysplasias…
Synonyms Acro-Dermato-Ungual-Lacrimal-Tooth (ADULT ) syndrome ADULT syndrome belongs to the TP63 family of ectodermal dysplasias that also includes ectrodactyly- ectodermal dysplasia-cleting (EEC) syndrome, limb-mammary syndrome (LMS), and ankyloblepharon-ectodermal dysplasia-cleft lip and/or palate syndrome (AEC). The clinical findings of ADULT syndrome can overlap with those of other ectodermal dysplasia syndromes and are variable in presentation. This…
We were proud to recognize the following individuals and families for the amazing contributions they have made to families affected by ectodermal dysplasias and the NFED. We honored them at our 35th Anniversary Celebration on July 22nd in St. Louis. Outstanding Service Award – Timothy J. Fete, M.D., M.P.H. For 23 years, Dr. Time Fete has…
We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…
With the help of contributors like you, we can continue to educate people about these rare disorders, support the people they affect and advance research to find better treatments. You have many ways to make a gift to support the vital work we do at the NFED. Without this (NFED Facebook) page, their staff and…
Different nail changes can occur in ectodermal dysplasias. This article addresses general nail issues as well as in these types: HED Clouston Goltz syndrome AEC syndrome EEC syndrome Description and treatment information are given for Development and Growth Treatments Thin Nails Thick Nails Curved Nails Loose Nails Discolored Nails Infection
Information and support are important to managing ectodermal dysplasias. Who better to share your challenges and triumphs than with a group who understands what it is really like to live with ectodermal dysplasia? To help you build a strong support network, we have many ways for you to connect with our ectodermal dysplasias community. I…