Coping and support

Children and adults with Rett syndrome need help with most daily tasks, such as eating, walking and using the bathroom. This constant care and disturbed sleep can be exhausting and stressful for families, and can impact the health and well-being of family members.

To better cope with the challenge:

• Find ways to relieve stress. It's natural to feel overwhelmed at times. Talk about your problems with a trusted friend or family member to help relieve your stress. Take some time for yourself doing something you like to recharge your battery.
• Arrange for outside help. If you care for your child at home, seek the help of outside caregivers who can give you a break from time to time. Or you may consider residential care at some point, especially when your child becomes an adult.
• Connect with others. Getting to know other families facing problems similar to yours can help you feel less alone. Look for online support and information from organizations such as RettSyndrome.org.