Living Young With Lupus: A Case Report on the Challenges of Multi-System Disease in a Young Adult

Systemic erythematosus lupus (SLE) is a multisystem autoimmune disease that can present aggressively within young people. The presence of severe multi-organ disease poses multiple challenges including physical, psycho-social, and, in this case, medico-legal considerations. We present the case of a young person's journey in navigating these complexities. A 16-year-old girl, whilst on holiday abroad, presented with polyarthralgia, weight loss, severe fatigue and lower limb myalgia. Immunological markers revealed high titres of antinuclear antibody (ANA), anti-double-stranded DNA (anti-dsDNA) and anti-Smith (anti-Sm) antibodies, confirming a diagnosis of SLE. On return to the United Kingdom (UK), she developed recurrent pericardial effusion, pleural effusion and suspected lupus nephritis ensued after difficulties with treatment adherence and declining of renal biopsy. This case explores how personal autonomy, psychosocial health and treatment adherence intersect to impact disease progression and patient outcome. Ultimately, this case highlights the importance of utilising a cross-specialty approach and seeking governance support early for preparedness in acute situations and support complex decision-making. This must be balanced with careful planning to empower young people with SLE to take an active role in their condition, which can be achieved with utilisation of rheumatology transition clinics.