Cystinosis Treatments Are in the Works at NIH

Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life.

Cystinosis is usually diagnosed before the patient’s second birthday. It’s a genetic metabolic disease that causes cysteine, an amino acid, to build up in most of the body’s organs, including the kidneys, eyes, and brain. Unless the patient receives treatment, he or she can develop end stage kidney failure by their ninth year.

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Covington isn’t just sitting back watching her life go by–she’s taking an active role in improving treatments for cystinosis by participating in a clinical trial through the National Institutes for Health (NIH). While there is no cure, treatments are improving the lives of Covington and other patients like her.

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Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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