Medical professionals must not rule out Tarlov Cysts simply because a patient is young, male, or has “too rare” a condition. The presence of Ehlers-Danlos Syndrome increases the risk of spinal meningeal cysts, but diagnosis requires suspicion, detailed imaging, and a willingness to look beyond the expected.

Jodey’s diagnosis of an inoperable (according to the story) perineural cyst came in 2016—less than a year before her death. It contributed to escalating pain and disability, and yet there’s no indication that her condition was treated as the serious neurological disease that it is.

For the first time in Spain, researchers are conducting a genetic study focused on Tarlov Cyst Disease, a debilitating and often misunderstood neurological condition.