Vous quittez maintenant le cystinosisunited.ca. Veuillez prendre note que les renseignements auxquels vous aurez bientôt accès pourraient ne pas être conformes aux exigences réglementaires canadiennes. Les autorisations en matière de commercialisation et la disponibilité des produits peuvent différer entre le Canada et d’autres pays.
Cystinosis is a rare, genetic disease that results in a buildup of cystine, an amino acid, inside cells.
The buildup of cystine leads to the formation of crystals which can cause damage to nearly every cell and organ in the body. Signs of damage usually start in the kidneys and eyes, but then develop differently in each person.
How does Michael’s cystinosis change the way his body works?
Michael’s cystinosis can change the way his body works in a lot of ways. It can cause his eyes to feel the light more than other kids’ eyes do. It can also make him feel the heat more than other kids. It can make Michael very thirsty and sometimes it makes him tired.
Why does Michael take a water bottle with him to school?
Cystinosis makes Michael’s mouth feel dry and it can make him very thirsty. So, he takes a water bottle to school. He can fill it up with water any time he gets thirsty. When you have cystinosis it can make you want to drink water many times a day.
Michael’s cystinosis medicine sometimes changes the way his breath smells. What does he do when that happens?
Cystinosis medicine can make Michael’s breath smell bad. When it does, he uses mints, and sometimes gum, to make it smell good. The medicine can also cause his body to smell bad.
Michael wears sunglasses even when it’s cloudy outside
Michael has cystinosis and wears sunglasses because his eyes feel the light more than other kids’ eyes do. Sometimes people with cystinosis even have to wear sunglasses indoors.
Because Michael sometimes gets tired during the day, he puts his head down on his desk and takes a nap
Because Michael’s cystinosis sometimes makes him tired during the day, he is allowed to have snacks at his desk (lucky him!) because they help him have energy.
What is Michael’s favorite snack?
Cystinosis can sometimes cause Michael to have low energy, so he is allowed to have snacks at his desk because they help him have more energy. He especially likes salty snacks, like pretzels and potato chips, but french fries are Michael’s most favorite snack! Michael could snack on a banana if he wanted to because they are also a very good source of energy.
Which of these is true about the medicine you may take for cystinosis?
You need to take your cystinosis medicine at the same time every day and it can lower the levels of cystine in your body. Your school nurse can help you take your medicine at your scheduled time. The medicine can limit the damage to your body and if you forget to take it, or don’t take it, damage to your body can start to occur quickly.
Congratulations! You passed the test. You’re smart and we are happy you learned a lot about cystinosis. You get a certificate!
Try again to receive your Certificate of Achievement. We are happy you are learning a lot about cystinosis.