Cystinosis Awareness Day – Discovering a New Type of the Disease

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In the late 1970’s, a hospitalization led to a cystinosis diagnosis which was uncommon at the time. Karen, and ultimately her sister, discovered they had late onset cystinosis in their 20’s. For Cystinosis Awareness Day, Karen shared a letter her mother wrote detailing their journey.

We thank all the cystinosis warriors who’ve provided feedback for our Cystinosis Awareness Day Myth Busters Campaign and continue to share their stories.