The National Foundation for Ectodermal Dysplasias, just 25 years ago, began supporting research. The research was to identify the genes which cause the 180+ ectodermal dysplasias. Those efforts have paid off. We know many of the causative genes for many of these conditions, but not all. We still have lots of work to do! One of…
Dry Eyes in Ectodermal Dysplasias
By Richard A. Lewis, M.D., M.S. Many different disorders of the eye affect the stability of the tear film; an unstable tear film is a hallmark of “dry eyes”. Proper classification of the cause of a tear deficiency is critical for several reasons: Appropriate therapy depends on proper diagnosis; Certain conditions of dry eyes are…
Understanding Genetics
By Pilar L. Magoulas. M.S., C.G.C. All ectodermal dysplasias are heritable or genetic disorders, which means that they can be inherited or passed on to children. However, it is possible for a child to be the first person in his or her family to be affected by an ectodermal dysplasia. Chromosomes and Genes The body…
Ectodermal Dysplasias: How Nails Can Be Affected
The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria. If…
8 Things You Should Expect From Your Dental Care Team
The oral manifestations of the ectodermal dysplasias are often complex, and affected individuals might benefit from a team approach to evaluation and planning for treatment. Do not accept all team members as being equally trained and experienced. Ask questions… about the training of key individuals on the team; about the format for team meetings; about…
Treating Common Nasal Problems in Ectodermal Dyspalsias
The following is an excerpt from the NFED’s “A Guide to the Eyes, Ears, Nose and Throat in the Ectodermal Dysplasias.” The common nasal problems of ectodermal dysplasias revolve around the management of nasal dryness and are usually managed without surgery. Surgery may be may be of some benefit if there is an associated internal deformity…
Food Allergies and Ectodermal Dysplasia
By Dr. Kay Motil Definition Food allergy, or hypersensitivity, refers to an abnormal immunologic reaction to food. Etiology Allergic reactions to food are caused by IgE activation against specific food proteins or non-IgE activation of other chemical processes involving eosinophil or T-lymphocyte blood cells. Clinical Features IgE reactions are rapid in onset, beginning within minutes…
Growth and Nutrition for Children with Ectodermal Dysplasias
(This is an excerpt from A Family Guide to the Ectodermal Dysplasias Syndromes, published by the NFED.) Growth abnormalities are common in children with ectodermal dysplasias. Weight deficits are present at an early age and persist throughout adolescence. Height deficits are seen primarily in children with ectodermal dysplasias other than hypohidrotic ectodermal dysplasia (HED). Parents…