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Topic: Allergies, Dental, Ears, Eyes, Growth, Hair, Hypohidrotic Ectodermal Dysplasia, Medical, Nails, Nose, Resource, Respiratory, Skin, Sweat Glands, Teeth, Types

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 disorder and what it all means for your child, but we are here to help!

We created this guide to help you know what to expect that first year and how to best prevent and/or treat the symptoms. In this guide, you will discover information on the following topics:

  • Dry skin, eczema, diaper rash, cradle cap, increased redness, peeling skin, Increased and Decreased Skin Pigmentation (Hyperpigmentation and Hypopigmentation)
  • Thin, sparse hair
  • Nail abnormalities
  • Sebaceous hyperplasia
  • Identification, Management & Prevention of Overheating in an Infant
  • Difficulties with Mucous and Secretions: nose, ears, airways
  • Difficulties With Feeding & Weight Gain: breastfeeding, lack of teeth, reduced saliva, introducing solid foods
  • Child Development and Other Information That Should Be Shared with your Doctor: hearing loss, difficulties with vision

If you are pregnant with a child affected by HED, you may want to print this guide and share it with your obstetrician and pediatrician to help them prepare for your child’s birth.

The most important thing to know is that you are not alone! We are here to help you with information and support.

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