Tayla has lived experience of Congenital Myasthenic Syndrome – a rare disorder that had a gradual onset from 17 years old, and now at 28 years old causes her full body paralysis for 1-3 hours multiple times a day, in addition to symptoms affecting her digestion, communication, vision, respiration and muscle control. Tayla is passionate to improve the care and diagnosis for others with rare diseases after enduring a complex, process-of-elimination diagnostic journey spanning 9 years. Throughout her experiences in healthcare, Tayla has developed robust self-advocacy skills and a comprehensive knowledge of the health system that enables her to critically analyse the opportunities to improve person-centred care, patient experience and outcomes. Her care has been in consultation with geneticists as well as encountering many specialist departments, which has sparked her interest in being involved as a consumer lead in multidisciplinary research. Tayla is an NDIS participant, and supports her siblings who are NDIS participants, so has a thorough understanding of navigating the system from different perspectives. As a disability advocate and engaging writer, Tayla is finding a renewed sense of purpose, service and care for others again, using her lived experience, whilst balancing her health needs.