We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

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.

What is it like to have Cystinosis?

Common symptoms How bad it is What people are taking for it
Nothing reported yet
Nothing reported yet
Nothing reported yet
Nothing reported yet
Nothing reported yet

What do patients take to treat Cystinosis and its symptoms?

Treatments reported by members Perceived effectiveness Overall rating of side effects # of Evaluations

These charts show data from Cystinosis patients’ latest treatment evaluations
Last updated:

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Cystinosis on PatientsLikeMe?

  • 9 patients have this condition
  • 0 new patients joined this month
  • 3 say Cystinosis is their primary condition

Age Proportion # of patients
<20 0
20s 4
30s 2
40s 0
50s 2
60s 0
70+ 0


Distribution of females vs. males

25% Females
75% 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 2
Not Diagnosed 0

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

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.