The rare disease that upended my life, but taught me resilience
A personal account of living with cystinosis, a rare genetic condition that causes crystal deposits in organs. The author details the challenges of managing the disease from childhood through early adulthood, including social isolation and physical health struggles.
Why it matters
It provides insight into the lived experience of rare disease patients and the importance of early diagnosis and long-term management.
I HAVE CYSTINOSIS, a condition that causes an amino acid called cystine to build up due to the body not breaking it down normally.
This is a first-person personal narrative with no political or ideological agenda.
Get smarter about the news
Sign up free for a feed built around what you actually care about, Dive Deeper research on any story, and the full text of every article.
Create free accountAlready have an account? Sign in