This NFED guide is written for parents who are expecting a child or have a newborn affected by Goltz syndrome (also known as focal dermal hypoplasia). This comprehensive guide gives parents and caregivers with both medical information and practical advice. It reassures you that while Goltz syndrome can present challenges, many children go on to…
Ectodermal Dysplasias and Fingerprints
Dr. Rylee Moody explains what adermatoglphyia is and how it leads to partial or complete lack of fingerprints. It’s a condition where someone has the absence of skin ridges and furrows. It can also appear on other parts of the body. There are two subtypes of adermatoglphyia: isolated congenital adermatoglyphia and adermatoglyphia-associated syndromes. Many types…
A Guide to the First Year of Life: Hypohidrotic Ectodermal Dysplasia
This guide is a comprehensive resource to help parents care for their baby affected by hypohidrotic ectodermal dysplasia (HED). HED is a rare condition defined by the inability to sweat, missing teeth and sparse hair. But, it can also affect many other body parts. A new diagnosis may be overwhelming as you learn about the…
Papillomas in Goltz Syndrome
Papillomas are a common skin issue for individuals affected by Goltz syndrome. In this library article, Dr. Cory Jonak describes Goltz syndrome and the different body parts and systems it can affect. Papillomas are growths that can appear anywhere on the skin. Download the full article to learn more about what colors they are, where…
Causes and Recommendations for Respiratory Issues in Ectodermal Dysplasias
Are individuals affected by ectodermal dysplasias at increased risk for respiratory problems? Our families often ask this question. In this article, Dr. Timothy J. Fete has the answer. He shares findings from numerous research studies over the years that investigated different types of ectodermal dysplasias and the respiratory issues affected individuals reported. Learn what causes…
Safer Products for Your Sensitive Skin
Many things that touch sensitive skin, which is common in ectodermal dysplasias, can cause irritation or an allergic rash. It’s easy to identify the cause of an irritant rash because it appears immediately after contact. In this article, dermatologist, Dr. Elaine Siegfried addresses how to prevent this happening. Plus, learn the difference between an irritant…
Webinar: Skin, Hair and Nails in the Ectodermal Dysplasias
Learn about four of the five major symptoms of ectodermal dysplasias in this webinar with pediatric dermatologist, Dr. Alanna Bree. She presents in-depth information about how the sweat glands, skin, hair and nails can be affected and ways to manage or treat them. You will learn: About the Expert Alanna F. Bree, M.D. is a…
Palmoplantar Keratosis (aka Keratoderma)
This library article explains what palmoplantar keratosis is, the different types and how it affects individuals who are affected by Clouston syndrome. You will learn at what age the skin condition can appear and what to expect. Some people experience reddening of the skin. Learn what things may be causing the reddening and what are…