debintlg1.gif (9514 bytes)
Epidermolysis Bullosa
Home Care Programme

Treatment

Introduction

The purpose of the chapter called Treatment is to give carers information on the options for treatment, nursing and care.

The seriousness of the disease and the subsequent effects on the patient are largely individually-determined and therefore not suitable for a general description. The information described should therefore be regarded as the background information which is essential to provide an outline of treatment, nursing, care and support of the individual patient, to inform the patient and to draw up an individual care plan.

This chapters deals with the way in which treatment, nursing, care and support may be implemented. The following aspects are discussed:

• physical care;

• mouth and dental care;

• obtaining and maintaining a good nutritional status;

• prevention and treatment of fusions and contractures;

• stimulation of sensorymotor development;

• adaptation of living and working environment.

The chapter concludes with a module which focuses on the psychosocial effects of the disease on the patient and on the environment and the various ways to support this process.

On the basis of the information of this chapter and the chapter Disease a number of important problems have been incorporated into a standard care plan (see chapter Standard care plan).