Dismiss this notification
PatientsLikeMe would like to remind you that your browser is out of date and many features of the website may not function as expected.
Please update your browser
for more security and a better experience.
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.
Lithium carbonate wasn't helping ALS patients, and we learned it faster than the clinical trials did. Read about it in
Nature.
Insomnia is more common—in fact worse—for people with chronic conditions. Read about it on the
blog.
Interacting with other PatientsLikeMe members improves your health. Read it on
healthaffairs.org.
The severity of Parkinson's Disease symptoms changes faster than researchers thought, so clinical trials should be designed differently. Read about it on
JMIR.
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
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.
Last updated:
Treatments taken by people for cystinosis
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
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.