Marion or the metamorphosis: a journey of self-reconstruction and hope in the face of FSHD.

This Patients' Forum centers on the testimonial of visual artist Marion Sellenet, who lives with facioscapulohumeral muscular dystrophy (FSHD). In her film Marion or the metamorphosis, co-created with Laëtitia Moreau, she documents her dual journey: coping with the physical manifestations of FSHD and overcoming a "second illness" of fear, despair, and stigma induced by the diagnosis. By relinquishing the hope of cure, she found renewed meaning and a sense of wholeness, advocating for collaborative approaches that integrate medical, philosophical, and experiential knowledge. Her account is complemented by reflections from Alexandra Belayew, who underscores the importance of patient education and accessible communication of research; Baziel van Engelen, who highlights the need to bracket biomedical knowledge to address lived experience; and Ria de Haas and Nicol Voermans, who emphasize patient engagement in care and research. Together, these perspectives illustrate the transformative potential of patient narratives and underline the value of patient-centered, holistic approaches in FSHD.