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145 A patient’s four decade journey to wellness : a model of care for living well with lupus
  1. M Erceg
  1. 1 Perth, Australia

Abstract

Background and aims Mary Erceg is a former teacher and senior public servant who has lived with systemic lupus erythematosus for over 40 years since initial diagnosis.

This presentation explores her personal journey through initial diagnosis; medications; flares; acute relapses; and treatment errors which resulted in 6 days in a coma, four months in hospital and profound long term health consequences. It charts a journey to a more effective model of treatment and self-management. This now sees her largely symptom free, on minimal lupus medication (blood pressure tablets) and leading an active personal and professional lifestyle.

Mary draws from her four decade experience to suggest a model of doctor - patient communication, collaboration and partnership that has implications for improving outcomes and quality of life for all lupus patients.

Methods

  • Giving the patient a voice. Understanding the powerful psychological benefits with consequential direct and indirect physical benefits for the patient when they are regarded as an “equal partner”, an active as opposed to a passive participant in the treatment journey.

  • Importance of information sharing with the patient, the treating immunologist and the general practitioner.

  • Understanding that the fluctuating and multi-organ nature of lupus symptoms means that treating obvious presenting symptoms without understanding and treating the underlying auto-immune causes can and does lead to treatment errors and adverse patient outcomes.

  • Addressing the whole patient, their physical, mental and emotional wellbeing, and the general hormonal system can greatly reduce ongoing symptoms and acute flares.

Results Improved patient outcomes.

Conclusions A more effective model of care.

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