Coping and support

Coping with a lifelong illness is challenging. Depending on the severity of your symptoms, you may face challenges at home, at work and in your relationships with others. Here are some suggestions that may help you cope:

• Increase your knowledge. Knowing more about Ehlers-Danlos syndrome can help you take control of your condition. Find a doctor who's experienced in the management of this disorder.
• Tell others. Explain your condition to family members, friends and your employer. Ask your employer about any accommodations that you feel will make you a more productive worker.
• Build a support system. Cultivate relationships with family and friends who are positive and caring. It also may help to talk to a counselor or clergy member. Support groups, either online or in person, help people share common experiences and potential solutions to problems.

Helping your child cope

If you are a parent of a child with Ehlers-Danlos syndrome, consider these suggestions to help your child:

• Maintain normalcy. Treat your child like other children. Ask others — grandparents, aunts, uncles, teachers — to do the same.
• Be open. Allow your child to express his or her feelings about having Ehlers-Danlos syndrome, even if it means being angry at times. Make sure your child's teachers and other caregivers know about your child's condition. Review with them appropriate caregiving skills, particularly in the event of a fall or injury.
• Promote safe activity. Encourage your child to participate in physical activities with appropriate boundaries. Discourage contact sports while encouraging non-weight-bearing activities, such as swimming. Your child's doctor or physical therapist also may have recommendations.