Ten patients with lipodystrophies and five caregivers from the USA and UK, together representing the experiences of 12 patients, conveyed the challenges and isolation they experienced as they navigated the diagnostic journey, interacted with healthcare providers, sought appropriate treatment, and learned how to manage the wide range of symptoms associated with congenital or non-human immunodeficiency virus acquired lipodystrophies.

To cope with the significant burden of daily symptom management and the acute sense of isolation, many participants turned to disease-specific patient support groups and expert clinical centers for emotional support, care coordination resources, and disease management best practices.

It is important to increase disease awareness to ensure an early diagnosis of lipodystrophy syndromes and a timely initiation of appropriate treatment.