cystinosis support – Patient Worthy

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This is My Struggle

Post author:Patient Worthy Contributor
Post published:July 3, 2020
Post category:Cystinosis

My name is Mika Jayne Covington. I’m 29 years old and I live with an ultra-rare disease called cystinosis. I am also a transgender woman and my pronouns are she,…

How This Group is Leading Kids with Cystinosis to Self-Advocacy

Post author:Sabina Kennedy
Post published:April 27, 2017
Post category:Cystinosis Rare Disease

The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…

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If Cystinosis is in Your Life, You Need to Join This Network

Post author:Farrah Fontaine
Post published:October 18, 2016
Post category:Cystinosis Rare Disease

If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…

This is My Struggle

How This Group is Leading Kids with Cystinosis to Self-Advocacy

If Cystinosis is in Your Life, You Need to Join This Network

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