Living With It

By Jean Campbell

I’m constantly amazed and inspired by the resilience of people living with rare and chronic diseases. Over the past 20 years as a patient advocate, I’ve met many patients who struggle with a devastating diagnosis, then learn to live with their condition without being defined by it.

I’ve also seen what happens when patients and families share their experiences. When it comes to educating rare disease communities, patient stories have far greater impact than any pamphlet or website.

Why are patient stories so powerful? Maybe it’s listening to their voices. Maybe it’s observing their facial expressions. Perhaps it’s the immediate personal connection. Whatever the cause, stories can humanize a disease and provide insight on living a full and rewarding life in spite of daily challenges.

Living with Cystinosis: A Closer Look is a great example. The message delivered by patients, caregivers and physicians is straightforward: Learn about your disease. Take your medicine as directed. Do what needs to be done, and then get on with living your life. Message received.

Read more about patient advocacy.


Living with Cystinosis: A Closer Look