Cystinosis

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

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.
Last updated:

What do patients take to treat Cystinosis and its symptoms?


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?


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

Gender

Distribution of females vs. males

33% Females
67% 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: