What is cystinosis?

Cystinosis is a rare genetic disorder that causes an accumulation of the amino acid cystine within cells, forming crystals that can build up and damage the cells. These crystals negatively affect many systems in the body, especially the kidneys and eyes.

How do members experience cystinosis?

Top 5 symptoms reported by people with cystinosis*

*Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.

Top treatments taken by people for cystinosis*

Who has cystinosis on PatientsLikeMe?

Age

Age Proportion # of patients
<20 0
20s 0
30s 9
40s 3
50s 0
60s 3
70+ 0

Distribution of sex

Sex

Sex Proportion # of patients
Male 11
Female 4