Johnsburg resident pushes for rare disease research
JOHNSBURG – Every day Paula Shal takes 52 pills.
She takes four pills every six hours for cystinosis, the rare disease she was diagnosed with 25 years ago, and she takes three anti-rejection medications for her fourth kidney transplant. She has pills for the side effects and vitamins to supplement the nutrition that goes straight through her system.
Cystinosis is a genetic disease – the abnormal accumulation of the amino acid cystine in various organs of the body, according to the Cystinosis Foundation based in Mo raga, Calif. In Shal’s case, it’s responsible for severe muscle-wasting.
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