School and bullying while living with cystinosis

Child with cystinosis walking to school with sibling

A child with cystinosis may stand out at school for being different. While no one wants another child to feel 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 about cystinosis and what it means to live with a lifelong disease.

Your child may feel more comfortable and confident if he or she knows what to do if cystinosis issues arise. Talking to teachers and other school staff can help them understand your child's situation. Knowing that there are adults who can help may reassure your child in facing any issues.

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

How cystinosis may make your child a target

Several things about cystinosis may make your child a target for bullying at school, such as:

  • Slightly smaller than average height or weight
  • Not able 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 unwell

Bullying resources available to help you and your child:

TEEN LINE is a nonprofit, community-based organization helping troubled teenagers address their problems. Their mission is to provide personal teen-to-teen education and support before problems become a crisis. They do this by using a national hotline, current technologies, and community outreach. educates kids, schools, and parents about how bullying can happen anywhere and 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. They know bullying is a serious community issue that impacts education, physical and emotional health, and the safety and well-being of students.