Educating the educators about cystinosis

Backpack of student with cystinosis

Children with cystinosis want the same opportunities as any other child at school. They want to learn how to read, play at recess, and discover the joy of friendships. But sometimes the challenges of living with cystinosis can get in the way. Below are a few tips to help you work with teachers and school staff. This way you can make sure cystinosis doesn't get in the way of your child's school experience.

Help school staff and teachers understand the facts about cystinosis with this download.

Dealing with absences

Cystinosis may cause your child to miss school. The major reasons for absences may be:
  • Doctor appointments
  • Feeling sick
  • Hospitalizations
  • Missing sleep because of medicine schedules
  • Dialysis 
  • Kidney transplant 
If you know your child is going to be absent, be sure to tell the school and your child's teacher in advance. You can even make a missed-school plan with your child's teacher. This can help your child keep up with classwork during absences.

Speaking about cystinosis at school

Helping peers understand cystinosis can make a big difference for your child. You, your child, or the school nurse may want to speak to teachers and students at the start of the school year to explain cystinosis to them.

Finding an advocate at school

Ask your child's teacher to help find a point person who can be your child's advocate at school. A point person is someone who can answer questions and handle problems. A counselor, nurse, or teacher are all good options.

School day checklist for cystinosis

This checklist contains helpful tips for making life more manageable for your child at school. Work with your child's school to complete this checklist.

Create a plan for managing your child's medicine at school

Consider doing the following:

  • Review medicine schedules with teachers and the school nurse. Create a plan that allows your child to get his or her medicine when it's needed
  • Keep a supply of medicines at school with the nurse as needed
  • Create an emergency medical plan with the school and your child's doctor

Identify a staff member to be your child's go-to advocate at school

  • Work with someone on the school staff who knows your child well. This person can help answer and tackle any problems or concerns. A counselor, nurse, or teacher are all good options

Ask your child's teacher to make special arrangements to make the classroom more comfortable for your child

Consider asking if your child can:

  • Chew gum or have mints to help mask the breath and body odor caused by medicine
  • Carry a water bottle to stay hydrated
  • Go to the bathroom as needed
  • Wear sunglasses indoors and/or sit away from the sunlight
  • Go to the school nurse to rest if tired
  • Eat snacks during class to deal with low energy levels
  • Keep an extra set of clothes with the school nurse in case of accidents

Work with the school to create a plan for keeping up with schoolwork

You might want to:

Discuss how cystinosis affects your child's participation in physical activities and/or recess

  • Let staff know that your child may have to be excused from certain activities during gym class
  • Explain why outdoor activities may need to be limited because of sun exposure

Discuss what other students will be told about your child's cystinosis

  • Create a plan with teachers that may include an informational handout or talking points that can easily explain cystinosis. Get the facts, and download the information to share
Print this page, and bring it to your next school visit