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*
Common symptoms
How bad it is
What people are taking for it
Common symptom
Fatigue
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Anxious mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Depressed mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Pain
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Stress
How bad it is
What people are taking for it
Nothing reported yet
*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 | Proportion | # of patients |
---|---|---|
<20 | 0 | |
20s | 0 | |
30s | 9 | |
40s | 3 | |
50s | 0 | |
60s | 3 | |
70+ | 0 |
Distribution of sex
Sex | Proportion | # of patients |
---|---|---|
Male | 11 | |
Female | 4 |