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…
We all have our own important life stories to tell. While each person’s experience of ectodermal dysplasia is unique, we all share certain common experiences and worries about ectodermal dysplasia. Our families’ stories may inspire you, make you smile, or perhaps even make you cry. They shine a light on different ways to manage ectodermal…
Maranke Koster, Ph.D. has been one of the leading researchers in ankyloblepharon-ectodermal dyspdefects-cleft lip and/or palate (AEC) syndrome for more than a decade. The NFED funded her current work with Peter J. Koch, Ph.D. After working with the NFED community, Dr. Koster became aware that skin fragility is not unique to individuals affected by AEC, as…
Current Research Developing Methods for Generating Full-Thickness, Healthy Replacement Skin for AEC Patients Maranke Koster, Ph.D. has been one of the leading researchers in AEC syndrome for more than a decade. The NFED funded her current work with Peter J. Koch, Ph.D. In 2015, NFED families provided skin biopsies for this project. Read progress update. Past…
Synonyms AEC syndrome Hay Wells syndrome Rapp Hodgkin syndrome is now considered a part of the disorder spectrum. The clinical findings of ankyloblepharon-ectodermal defects-cleft lip and/or palate syndrome can overlap with those of other ectodermal dysplasia syndromes and are variable in presentation. This complicates diagnosis and further characterization of these disorders. Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or…
We are a part of the Ectodermal Dysplasias International Network with the following ectodermal dysplasias groups around the world. We work with their leaders to collaborate and share information. The group also works to provide information about the ectodermal dysplasias community for health care providers. Partners International Partners Media Partner Sponsors We are grateful to…
Searching for a diagnosis can be frustrating. Often, the diagnosis is delayed because providers don’t realize that ectodermal dysplasia is the cause for your child’s fever, poor hair growth or failure to thrive. There’s then more frustration and delay in finding a diagnosis of the specific type of ectodermal dysplasia. Although it’s very helpful, a…