Region Jnkpings ln Odontologiska Institutionen

To live with an aberrant facial appearance

Bergendal B*, Gustafsson Bonnier K, Wallenius E


The aim of the conference was to elucidate the psychological and social consequences of having a craniofacial disorder and to establish networks of professionals to exchange experiences and to enhance knowledge on rare disorders affecting the appearance of the head and face.


Many individuals with an aberrant facial appearance or the parents of children with craniofacial disorders have many different contacts with the care giving systems in medicine and dentistry. Each category of professionals tend to "do their part" and leave the coordination of planning and performing of therapy to the patient or the family. Information is often given on surgical procedures and other technical aspects of treatment rather than a comprehensive discussion on the benefits and risks of different treatment options. The issue of the psychological and social consequences of the disability is not specifically brought up by any of the professionals involved.


In a panel discussion led by a professional journalist individuals with an appearance disability and parents of children with craniofacial disorders expressed their experiences from their contacts with professionals and their wishes for the future. Specialists in craniofacial and maxillofacial of patients and families with disabilities affecting appearance gave lectures on the importance of counselling people with disfigurement before treatment. 


Almost 200 professionals representing habilitation clinics, craniofacial surgeons, speech therapists and specialists in dentistry attended the conference in Stockholm in November, 2000. The panel of patients and parents revealed many shortcomings in the caring of persons with a facial disfigurement. There was general agreement that the most importand areas of concern for the future were: Better information and counselling, more discussion on pros and cons on offers of treatment and better coordination of different parts of treatment. Professionals tend to aim at normalising facial appearance while patients and parents emphasised the right to decline offers of treatment. The panel wanted to see more support and advice in the process of making decisions on treatment as well as strategies for handling daily living with an aberrant appearance which often draws public attention. 


The issue of living with an aberrant facial appearance ought to be brought into focus by professionals. One way of doing this is the establishing of multidisciplinary networks. Further efforts should be performed in close cooperation with patient organisations.

Uppdaterad: 2013-04-03
Anna Thofelt, Avdelningen för odontologisk radiologi Jönköping, Folktandvården