The Loneliness of Living with Von Hippel-Lindau Syndrome

Mikaela Gage shares her experience living with Von Hippel-Lindau (VHL) syndrome, a hereditary condition caused by mutations in the VHL gene that predispose individuals to develop tumors and cysts in multiple organs, including the brain, spine, kidneys, adrenal glands, and eyes. Mikaela discusses the ongoing surveillance and surgeries her condition requires, the emotional and practical challenges of living with a rare disease that is largely invisible to those around her, and the profound sense of isolation that can come with a condition few people know or understand. She also reflects on finding community and connection within the VHL world.