Anonymous — an organization for families of children with undiagnosed brain diseases

Abstract

As a consultant child neurologist with opportunities over many years to travel widely throughout Sweden, I have time and again seen severely brain impaired children, without any reasonable explanation for their condition and with a disturbing lack of precise diagnosis, despite vigorous investigations. Not even a name for the disastrous condition could be provided for the frustrated parents. Whilst understanding that an effective treatment was impossible to find, these families repeatedly asked for new consultations in the hope of at least a precise diagnosis and a label. Indeed, it is a hard burden for any family to have a child with a hopelessly progressive brain disorder, and ignorance as to the cause makes it even worse. There are no experiences to learn from, no straws to clutch for help, no hope for meaningful treatment, no special interest group to join. Encouraged by the Swedish Social Council in their 1994-97 campaign for ‘Small and less well known handicap groups’, I took the initiative to start a family network group for support and information to families with situations as described. ‘Anonymous’ was rapidly established through this official support and with financial starting grants. From being a pioneering project in 1994, the activity has since 1997 become established as an independent special parents’ interest organization. The project immediately created wide interest and became an instant success among families with these problems. Their relief to meet other parents in the same situation was great. The medical