A photo of Willemijn, who discusses visual snow syndrome

Living with Visual Snow Syndrome

Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only Read more

After Cavernous Malformation Surgery on Her Brain, Christina Developed Hypertrophic Olivary Degeneration

When Christina turned 40 she suddenly started having migraines every day. She was going to work as an accountant dealing with spreadsheets and math, while splitting headaches turned each day into relentless agony. After a month of this pain she finally went to see her doctor, who ordered an MRI. Read more

Living with Stickler Syndrome, RLS, Blindness and More

Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second Read more