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Posts with tag Ehlers-Danlos-Syndrome

15 Minutes of Fame: Dislocated but not disconnected, Part 2

15 Minutes of Fame is our look at World of Warcraft players of all shapes and sizes – from the renowned to the relatively anonymous, the remarkable to the player next door. Tip us off to players you'd like to hear more about.

Last week, we met Lileya of Lightbringer-EU, who has a rare, lifelong condition that causes her joints dislocate at the drop of a pin. Stacking up a Lifebloom roll can literally dislocate a finger or her wrist. "I get up in the morning, and the first thing we do is check to make sure that all my joints are in place -- which they rarely are," she recounts. "I need help sitting up, and the first thing my husband says when I put my feet on the ground is 'Slowly, let's not dislocate those ankles standing up.' Each day is different but the same."

What keeps Lileya at the keyboard despite these seemingly insurmountable challenges? We visited with Lileya to explore how her love of end-game raiding and her struggle to balance a precarious collection of symptoms and physical challenges keeps her connected to WoW and to life. This week, Part 2 of our interview with this determined player.

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Filed under: Virtual selves, Features, Interviews, 15 Minutes of Fame

15 Minutes of Fame: Dislocated but not disconnected


15 Minutes of Fame is our look at World of Warcraft players of all shapes and sizes – from the renowned to the relatively anonymous, the remarkable to the player next door. Tip us off to players you'd like to hear more about.

We've written about disabled gamers before, but Lileya of Lightbringer-EU brings a perspective to playing WoW that we haven't heard. Lileya's disability is a rare, lifelong condition that makes even the simplest tasks impossible some days. From her ankles to her knees, from her fingers to her shoulders, Lileya's joints dislocate at the drop of a pin. Even stacking up a Lifebloom roll can dislocate her wrist. "I don't have all that much in common with Aaron who has recovered enough that he can walk without assistance and drive, or Kalzedhan who plays for 12 to 14 hours a day, or Catten," she muses. "I have a rare genetic disorder that I have never lived without. My life is very different from theirs."

Lileya's relentlessly frank, articulate blog, In the Fringes, exposes what it's like to live with the horrifying prospect of keeping track of all your joints on a minute-by-minute basis. We visited with Lileya for a two-part interview exploring how her love of end-game raiding and her struggle to balance a precarious collection of symptoms and physical challenges keeps her connected to WoW and to life.

Read more →

Filed under: Virtual selves, Features, Interviews, 15 Minutes of Fame

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