Psychoeducational Characteristics of Children with Hypohydrotic Ectodermal Dysplasia

This study evaluated 45 children with hypohydrotic ectodermal dysplasia (HED) and 59 comparison control children who were matched for gender, age and socioeconomic status. The children affected by HED were recruited from two consecutive NFED Family Conferences. The children were administered tests of intelligence and educational achievement, as well as assessment of adaptive behavior skills and assessment of attention, hyperactivity and oppositional-defiant behavior.

Youth with HED performed similarly to control children in all measures of intelligence, academic achievement and adaptive skills. The study results may indicate some increased risk for attention deficit disorder, although the data were not sufficient to make this conclusion. Further research into attention span in individuals with HED may be indicated.

In conclusion, the preliminary findings of the study do not support previous reports in the medical literature that indicated an increased risk for intellectual impairment or learning disability in children with HED. Parents, teachers and primary care providers should be advised that HED is unlikely to be associated with intellectual disability or learning disability.

The preliminary results of the study have been reported at the Pediatric Academic Societies Meeting in May of 2005, and are being prepared for submission for publication in a medical journal at this time.

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