Beth Nguyen, RN, is a patient with syringomyelia, a rare disease disease 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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