09/16/2025
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Rare Artist will be spotlighting our 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArtist.org. Pieces are presented in no particular order.
#10 Meet Amanda Van Eps, diagnosed with Ehlers-Danlos Syndrome and Subependymoma. Amanda's 3D piece, made using gold chains and clay bead, is called "Ball & Chain".
Amanda says, "Our skeleton connects us all, yet rare disease changes how it is carried and perceived. Ball & Chain uses variations of gold chains to drape a skeletal frame, accentuating the spine and ribcage in a way that honors the body while contrasting the instability it can endure. The thick central chain anchors the piece with rigidity, while finer chains drape outward as ribs, shifting with movement. A heavy, hand-crafted clay bead pulls downward, embodying the weight of diagnosis and the way it reshapes daily life.
These materials mirror the contradictions of Ehlers-Danlos syndrome. Muscles ache with unrelenting tension while joints slip silently out of place. These movements are invisible to the human eye, yet this wearable piece renders them visible. As the ribs of chain sway and shift, instability is no longer hidden but felt.
Visibility is often the first barrier in advocacy. Rare disease patients face invisibility twice: first in pursuit of diagnosis, then in the fight for recognition, care, and equity. By reimagining the body as both beautiful and burdened, this piece reconciles resilience and vulnerability.
Art shifts perception. It reveals truths no scan can capture, transforming the unseen into something undeniable and urging dialogue, advocacy, and action."
