School and bullying

Child with cystinosis walking to school with sibling

A child with cystinosis may come across as being different and so may draw the attention of classmates. While your child may never be bullied, it's important to know it may happen and why your child may become a target.

Most bullying likely comes from a lack of understanding of cystinosis and what it means to live with a lifelong disease. So education is key. Talking to teachers and other school staff can help them—and your child’s classmates—understand your child's situation. Knowing that there are adults who can help may reassure your child when facing social issues. Educating your child may help, too. Knowing what to do if bullying occurs can help your child feel more comfortable and confident.

Help teachers and school staff understand the facts about cystinosis. Download this brochure and print it out to share in school or email to receive hard copies.

How cystinosis may make your child a target

Some things about cystinosis that may cause bullying at school include:

  • Slightly smaller than average height or weight
  • Unable to join in sports, recess, and physical education
  • Sulfur smell on the breath or body from medicine
  • Need for sunglasses inside because of light sensitivity
  • Missing classes for doctor visits or feeling sick

Resources to help you and your child with bullying:

TEEN LINE is a nonprofit, community-based organization helping troubled teenagers address their problems. The organization’s mission is to provide personal teen-to-teen education and support before problems become a crisis. TEEN LINE offers a national hotline, current technologies, and community outreach. educates schools, kids, and parents about how bullying can happen anywhere, to anyone. With the right tools and information, everyone in the community can help stop bullying at school, online, and in the neighborhood.

PACER's National Bullying Prevention Center actively leads social change so that bullying is no longer an accepted childhood rite of passage. PACER provides resources for students, parents, educators, and others. Bullying is a serious community issue that impacts education, physical and emotional health, and the safety and well-being of students.

Michael's Activity Book

Help your child’s classmates learn about cystinosis. Share Michael's Activity Book with teachers so they can teach the disease in the classroom.

Request Michael’s Activity Book

Stay connected

Get information about living with cystinosis by email.

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