Who takes care of the cystinosis caregiver?

Caregiver of a person 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:

  • Make appointments for your own physical checkup
  • Take a half-hour break as often as possible, and do something you enjoy
  • Walk 3 times a week; start with a 10-minute walk
  • Seek and accept support from others who can help with caregiving tasks
  • Find someone to talk to, like a friend or a professional counselor

Find out more about what you can do:

Caregiver Action Network (CAN)

CAN is a nonprofit organization providing education, peer support, and resources to family caregivers across the country, free of charge.

Family Caregiver Alliance (FCA)

FCA supports the important work of families nationwide caring for adult loved ones with chronic, disabling health conditions.

National Alliance for Caregiving (NAC)

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.

Rosalynn Carter Institute for Caregiving (RCI)

RCI's goal is to support caregivers—both family and professional—through efforts of advocacy, education, research, and service.