Ectodermal Dysplasia Syndromes

Ectodermal dysplasias are a large group of inherited disorders that result in abnormal development of the skin, hair, teeth, nails and glands together or in combination. To date, more than 150 distinct disorders have been described but due to the variance in genetic conditions, there are likely many more types of EDS. The most common ectodermal dysplasia is Hypohidrotic ectodermal dysplasia (HED), characterized by a reduced ability to sweat.

Ectodermal dysplasias also have distinctive physical characteristics that can assist health care professionals in making a diagnosis of EDS. However, each syndrome may have a combination of different symptoms.

As genetic condition, EDS are hereditary and can impact both genders and all races, although some syndromes may be X-Linked or more common in one gender. Many countries have associations, like CEDSA, who are here to help and inform individuals and families.

While there is currently no cure for ED syndromes, It is important to note that life-span is normal for the vast majority of syndromes and the majority are not characterized by developmental delays. Individuals with EDS live happy, active and full lives despite special medical needs.