I have stiff-person syndrome. It's hard to diagnose and treat, so I plan to travel the country in an RV looking for answers.

Wed, 08/07/2024 - 06:24

Composite image of Carrie Robinette on the left smiling and staring at the camera and her RV on the right being towed by a black pick-up trick, parked on a street on a sunny day. — Carrie Robinette has stiff-person syndrome.
Courtesy of Carrie Robinette

Carrie Robinette has stiff person syndrome, a rare disease that causes muscle spasms.
She said doctors had been unable to help her get treatment or pain management.
She's planning to live in an RV while traveling to specialists.

This as-told-to essay is based on a conversation with Carrie Robinette, a patient advocate with Kyverna. It has been edited for length and clarity.