Cystinosis

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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.

Common symptoms reported by people with Cystinosis

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, insomnia, fatigue, and pain) regardless of condition.
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Treatments taken by people with Cystinosis

No data

Let’s build this page together! When you share what it’s like to have Cystinosis through your profile, those stories and data appear here too.

Got a question about living with Cystinosis? Members in the forum might have the answers.

Compare treatments taken by people with Cystinosis

No data

Let’s build this page together! When you share what it’s like to have Cystinosis through your profile, those stories and data appear here too.

Got a question about living with Cystinosis? Members in the forum might have the answers.

Who has Cystinosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 5
30s 2
40s 0
50s 3
60s 0
70+ 0

Gender

Distribution of females vs. males

30% Females
70% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1
20-29 years 0
30-39 years 0
40-49 years 0
50-59 years 1
60-69 years 0
70+ years 0

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 3
Not Diagnosed 0

These charts show data from Cystinosis patients who have completed their condition history
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