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Here are just some of our faqs surrounding Ectodermal Dysplasia. If you cannot find the answer to your questions then please contact us.

For informational purposes only. Questions regarding specific patient issues should be directed to the appropriate professionals for resolution.

Do people affected by Ectodermal Dysplasia have normal intelligence?

Regardless of what you may have heard or read, there is usually no reason to expect anything but normal intelligence with Ectodermal Dysplasia. Some of the extremely rare forms have been associated with mental retardation, but this will be evident very early, possibly at birth, and has nothing at all to do with the vast majority of the Ectodermal Dysplasias. As with the general population, some individuals affected by ED may be very bright, some may be average, and others may find challenges in learning.

Do people affected by Ectodermal Dysplasia have a normal life span?

There is no evidence that the life span for a person diagnosed with one of the common Ectodermal Dysplasias is shorter than average. We have many middle-aged to elderly adult members. There are certain rare syndromes where life span may be shortened.

Can children affected by hypohidrosis (the inability to perspire) participate in sports?

The answer is ‘Yes’. The ED Society has ample evidence of individuals who have successfully participated in athletics including football, basketball, track, gymnastics, swimming, martial arts, rugby, bowling, etc. Included in that number are some who were extraordinarily successful and deemed champions in their sport. Allowing the child to try various activities enables them to learn whether or not they like the sport, how to accommodate their inability to perspire, and when to acknowledge that some activities may require more than their bodies can comfortably deliver.

What is the long-term effect of denture use?

The long-term effects of denture use include shrinkage of the bone supporting the denture and altered chewing patterns and food selection. Since individuals with Ectodermal Dysplasia and teeth missing from birth, have less supporting bone than non-Ectodermal Dysplasia individuals with no teeth, the inevitable shrinkage of the bone supporting the denture gives the individual with Ectodermal Dysplasia a very poor prognosis for long term use of removable prostheses.

Considering the purpose of the mouth/jaw, are dental implants the only option to restore adequate function?

The purpose of the mouth/jaw/teeth are to function in harmony with tempromandibular (jaw) joints to facilitate eating, breathing and speech, maintain the structures of the lower third of the face, including the proper relation of the upper and lower jaws, and to maintain a healthy body self-image, especially of the mouth and face. Prior to the development of reliable and predictable dental implants the only option for many patients was a removable denture.

It has been demonstrated in several studies that complete dentures restore approximately 25% of the biting force of natural teeth. An implant supported prostheses restores approximately 80+% of the patient’s biting force, arrests, or even reverses, bone atrophy, and improves the individual’s image of their mouth and face. Therefore it is probably true for most people that adequate oral function, as defined in contemporary terms, can best restored with implant supported dentures.

What is the difference between Anhidrotic, Anhydrotic, Hypohidrotic, and Hypohydrotic Ectodermal Dysplasias?

Anhidrotic means no sweating-derived from the Greek words an (none or negative) and hidros (sweat).

Anhydrotic means no water-from the Greek an (none or negative) and hydro (water)

Hypohidrotic means deficient sweating from the Greek words: hypo (under in the sense of deficient) and hyros (sweat).

Hypohydrotic means deficient water.

A person who does not sweat at all could be said to be anhidrotic. Someone whose sweat function is diminished (sweats little in response to heat or in response to stress only) could be said to be hypohidrotic. Those who are partially or totally devoid of water (body fluids, etc) could be said to be hypohydrotic or anhydrotic respectfully. Thus, there is no question about the correct word to use for those individuals with one of the ectodermal dysplasias with diminished sweating: it must be hypohidrotic, since no one is totally devoid of sweat function.

Why Am I Discharged from Hospital Outpatients –  a frequently asked question