Living with Stickler Syndrome, RLS, Blindness and More

A photo of podcast guest Lily, who discusses living with Stickler syndrome

Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second grade she had the first of two pharyngeal flap reconstruction surgeries, since the part of her throat that should open and close to produce letter sounds or swallow wasn’t moving. Although she was already born visually impaired, at 14 years old she woke up one day to find her left eye was pointed to the left, while her right was still facing forward. From that day on she would experience double vision and constant headaches, with her brain needing to interpret two images simultaneously. She also experiences full body RLS (restless leg syndrome) which has made her classmates believe she was having a seizure. Lily has developed an impressive resilience to these challenges, discovering tools and accommodations to push through and pursue her passions.

In this episode of the Major Pain podcast Lily discusses her health journey, shares information on several rare conditions, and contemplates sociological issues she has encountered along the way. Lily is a self-described nerd who loves Star Trek and video games, who creates content on TikTok discussing and analyzing her favorite media. Although many legally blind individuals have vision of some kind, she is continually accused of faking her disability by ill-informed people. She shares with us the types of accommodations she uses to enjoy her favorite pastimes, including how she focuses one eye on a blank wall while the other views a zoomed in video game screen. She also shares her opinions on ableism in society, and how normalizing disability can create a more equitable future.

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