I set up my supplies and find a willing vein, poking myself to infuse life-saving medication. I've repeated this ritual for years. Hemophilia and Superior Mesenteric Artery Syndrome (SMAS)—two rare diseases—have challenged and shaped my life. I don't get to choose what these diagnoses cost me. But I can choose what happens to the evidence.
For years, I saved what medical waste bins usually claim: vial caps, saline syringe caps, and butterfly needles. I began this piece over a year ago, but when SMAS struck, my body deteriorated. As doctors struggled to explain my massive weight loss, the art was put on hold for a full year while I fought for my life. Returning to finish this work became a symbol of triumph over challenges caused by another rare disease and a celebration of survival.
IV Couture is my way of expressing gratitude for the treatments that saved my life, while refusing to hide the reality of what survival requires. Rare disease advocacy, to me, means showing the full picture—the burden and the beauty—so the invisible parts of this life become impossible to look away from.
Category: 3D Material Art
Rare Disease: Hemophilia A and Superior Mesenteric Artery Syndrome
Birth Year: 1973
