Ectodermal Dysplasia

The year was 1981. What began as a simple quest for information to help our family deal with the challenges of ectodermal dysplasia (ED) grew to become what is now the National Foundation for Ectodermal Dysplasias (NFED). At that time and to this day, I consider John R. Lintz, DDS, the dentist who initially diagnosed and provided dental care for our son, to be the epitome of the profession. I have great regard for dentists like him: those who provide quality care in a timely manner, dispense compassion and understanding in liberal doses, and work tirelessly for the well-being of the patient and the family.

The year was 1981. While our experiences with dentistry and dentures in a two-year-old were entirely positive, that was not always the case for other families. At that time, most children affected by ED syndromes went without dentures until their teenage years. It was believed that young children could not adapt to dentures. Furthermore, the cost of care was often prohibitive providing an excuse for delay of treatment. In 1981, it was not at all unusual for women with many missing teeth not to be questioned about the absence until they gave birth to sons who were fully affected by a type of ED, most often hypohidrotic ectodermal dysplasia.

Fast forward to now. A new millennium has officially arrived. Here at the NFED we are celebrating some remarkable successes. Included among them are our Treatment Fund, which provides financial assistance for oral health care, and a dental implant program. Also, we have significantly impacted both the age of diagnosis and age of first treatment and spearheaded legislative efforts that are improving insurance coverage. I wish, however, that I could report that all of the problems faced in 1981 have been resolved. How nice it would be for all children affected by ED syndromes to have a functioning and esthetically pleasing dentition. But calls to our office indicate that such is not the case. The excuses provided by members of the dental professions are often pitiful. "He'll look fine with just his two teeth if we bond them." "Let's wait with dentures until she's fully grown." "The cost of care will be $50,000--we need half upfront and the remainder when the work is complete." How I yearn for all of these children to have the type of dentist who cared for our child. How I wish they could all experience the positive impact of a complete dentition at an early age. And women with many missing teeth continue to remain undiagnosed because no one cared enough to question their missing teeth. Their anger resonates in our office following the birth of children with similar problems that are diagnosed shortly thereafter.

Fast forward to 2004. Financial barriers to care still exist. With virtually no improvement in Medicaid reimbursement and no tidal wave of support for the dental effects of birth defects to be covered under medical insurance, patients go without care. While there has been much excitement in dentistry since the issuance of the Surgeon General's Report on Oral Health, where is the excitement for the special care patients, those needing something beyond routine care? When will the oral health needs of children and adults affected by conditions like amelogenesis imperfecta, ED, and Reiger's syndrome become a priority? When will dentists faced with providing care for these individuals be educated to provide that care effectively? When will dentistry become a partner for these patients rather than a stumbling block? The questions from 1981 are still there. When will there be answers?

COPYRIGHT 2004 American Dental Assistants Association
COPYRIGHT 2004 Gale Group