Background Lymphoedema is a chronic condition that requires lifelong, time-consuming and laborious management. It can have significant effects on physical, psychological and social well-being. Children and young people with lymphoedema require access to expert services to aid early diagnosis and referral for assessment and treatment.

Aim To explore the perspectives of children and young people living with lymphoedema and those of their families, as well as their experiences of the national paediatric lymphoedema service in Wales.

Method A qualitative approach was adopted using semi-structured interviews with participants who had been referred to the national paediatric lymphoedema service in Wales.

Findings A total of 15 families were interviewed. Five themes were identified: lack of professional awareness of paediatric lymphoedema; a journey to diagnosis as lost in the system; ‘being me’ – what it feels like to have lymphoedema; managing lymphoedema and feeling supported; and the benefits of a national paediatric lymphoedema service. Two sub-themes were identified within the ‘being me’ theme – body image and self-esteem, and loss of control.

Conclusion Lymphoedema has a profound effect on daily life, body image and self-esteem. Participants tended to be resilient and determined to continue with their lives. Importantly, they valued being under the care of a service that understood their condition.