Girl With Rare Disease Doesn’t Know Pain

Monday, November 1st, 2004

Freaky. From Girl With Rare Disease Doesn’t Know Pain:

Ashlyn Blocker’s parents and kindergarten teachers all describe her the same way: fearless. So they nervously watch her plunge full-tilt into a childhood deprived of natural alarms.

In the school cafeteria, teachers put ice in 5-year-old Ashlyn’s chili. If her lunch is scalding hot, she’ll gulp it down anyway.

On the playground, a teacher’s aide watches Ashlyn from within 15 feet, keeping her off the jungle gym and giving chase when she runs. If she takes a hard fall, Ashlyn won’t cry.

Ashlyn is among a tiny number of people in the world known to have congenital insensitivity to pain with anhidrosis, or CIPA — a rare genetic disorder that makes her unable to feel pain.
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Ashlyn’s baby teeth posed big problems. She would chew her lips bloody in her sleep, bite through her tongue while eating, and once even stuck a finger in her mouth and stripped flesh from it.

Family photos reveal a series of these self-inflicted injuries. One picture shows Ashlyn in her Christmas dress, hair neatly coifed, with a swollen lip, missing teeth, puffy eye and athletic tape wrapped around her hands to protect them. She smiles like a little boxer who won a prize bout.

Her first serious injury came at age three, when she laid her hand on a hot pressure washer in the back yard. Ashlyn’s mother found her staring at her red, blistered palm.
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Infections with no outward symptoms also concern them. They heard of a case where a child with CIPA had appendicitis that went untreated until her appendix burst.

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