NMOSD REAL STORIES

Meet Chelsey

Living with NMOSD

In 2009, Chelsey woke up with severe eye pain and noticed that her eyesight had been significantly impacted. Prior to this, Chelsey had spent nearly a year visiting different specialists to identify the cause of the symptoms she had been experiencing: vomiting, numbness, tingling in her limbs, headaches, tachycardia, and disabling fatigue.

Chelsey, living with NMOSD, sitting on a couch

After being admitted to the hospital for the eye pain, Chelsey was diagnosed with multiple sclerosis (MS). During the 10 years that followed, Chelsey continued to experience those symptoms and new ones, along with 10 episodes of optic neuritis. She began to wonder if she truly had MS or if there had been a mistake.

Chelsey, living with NMOSD, painting Chelsey, living with NMOSD, cutting fruit

“I don’t define myself as having a rare disease. It’s part of my life, but it’s certainly not who I am.”

In the fall of 2017, she woke up with the same unmistakable eye pain she’d had before, this time in both eyes. She spent the next 8 months of her life legally blind. Finally, in January 2019, after a week in the hospital following an allergic reaction to medicine, her neurologist began to explore neuromyelitis optica spectrum disorder (NMOSD), formally diagnosing her in February after a series of tests and scans.