This article presents the findings of a qualitative study looking at the experiences of parents of children with primary lymphoedema. Six parents participated in the study, which was conducted in Glasgow, and verbatim transcripts of the interviews were analysed for recurring themes. The findings showed that these parents endured a difficult time before receiving a diagnosis and appropriate treatment, caused by a lack of professional awareness of the condition. Their day-to-day management of the illness was hampered by the psychological effects on the children. Parents also found a reluctance by professionals to seek information on their behalf. Professional awareness of this condition needs to be raised and improved information and support made available for those involved in the care of children with lymphoedema. The article discusses how this may be achieved.