Rare Disease Report

A Day in the Life of a Syringomyelia Patient

OCTOBER 22, 2016
Beth Nguyen, RN

Nurse Beth Nguyen has changed her mission from physically helping patients to educating patients and doctors about syringomyelia, a rare disease she now has in which cysts form inside the spinal cord. These cysts lead to multiple symptoms that impacts the person's ability to walk, breath, digest, etc. In this interview at NORD Rare Disease and Orphan Drug Breakthrough Summit, she describes what the disease has done to her quality of life and how she is working hard to keep the disease from defining her.
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