As a caregiver, you are responsible for making sure you understand the disease your child has, how it can affect the body, how it is treated, and how to manage day-to-day life with cystinosis. It’s also important to be able to advocate for yourself and your child. By doing so, you may get the information you need to make good decisions about your child’s health and well-being. Being an advocate involves finding support, knowing your rights, and learning how to solve problems. Most people caring for someone with a lifelong disease such as cystinosis learn how to become an advocate, and you can, too.
Insights from a doctor
Watch pediatric nephrologist, Dr Ken Lieberman, discuss critical issues like involving siblings, white blood cell cystine testing, adequate nutrition, and more.
Plans and resources for school, including a checklist that can help caregivers get prepared.
for the classroom
A child with cystinosis may have needs or qualities that are different from their classmates. As your child’s caregiver, it’s important to recognize this and why your child may become a target and how to handle it.