The challenges of antiphospholipid syndrome: experience from diagnosis to self-care

A young woman presented to our unit with pancreatitis and acute kidney injury (AKI) 4 weeks after initiation of an oral contraceptive. She subsequently developed seizures due to posterior reversible encephalopathy syndrome and required ongoing haemodialysis for oliguric AKI. Routine antiphospholipid antibody screen was normal, but arterial and venous thromboses were identified on renal biopsy. Further coagulation studies identified an antiphospholipid-dependent inhibitor confirming the suspected diagnosis of antiphospholipid syndrome. She remained seizure free with control of hypertension and was established on anticoagulation. She remained haemodialysis dependent performing this independently at a new self-care unit. She provides us with valuable insights into her experience encouraging us to reconsider our current methods of education and communication in our younger population of patients living with chronic disease.