Season 5, Episode 4: In conversation with Bailey Miller.

→ Who?: Bailey Miller, a rare disease patient, a young adult rare representative

→ Rare Disease Connection: Bailey is a patient living with Occult Tethered Cord Syndrome & Syringomyelia.

→ What is Tethered cord syndrome: is a stretch-induced functional disorder associated with the fixation (tethering) effect of inelastic tissue on the caudal spinal cord, limiting its movement. This abnormal attachment is associated with progressive stretching and increased tension of the spinal cord as a child ages, potentially resulting in a variety of neurological and other symptoms. 

Syringomyelia: the development of a fluid-filled cyst within the spinal cord. The cyst, which is sometimes called a syrinx, can grow larger over time. 

→ Where to find Bailey?:

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