Tips for advocating for yourself or your child
Learn how to speak up for yourself or your child while living with cystinosis.
As a caregiver, your child with cystinosis is your focus. But sometimes your own self-care can fall to the side. Did you know that taking care of others can affect your own health? Do you get enough sleep, eat well, exercise, take breaks to relieve stress, and go to your own doctor visits? These things are important for self-care so you can be healthy to help care for someone with cystinosis.
Some things you can try to help relieve stress and help stay healthy include:
CAN is a nonprofit organization providing education, peer support, and resources to family caregivers across the country, free of charge.
FCA supports the important work of families nationwide caring for adult loved ones with chronic, disabling health conditions.
NAC is a nonprofit group of national organizations. It focuses on advancing family caregiving through research, innovation, and advocacy. NAC conducts research, does policy analysis, and works to increase public awareness of family caregiving issues.
RCI's goal is to support caregivers—both family and professional—through efforts of advocacy, education, research, and service.