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Coping and Support
Coping with a lifelong illness is rarely easy. Depending on the severity of your symptoms, you may face challenges at home, work and in your relationships with others.

Here are some suggestions that may help you cope with the challenges of Ehlers-Danlos syndrome:

  • Increase Your Knowledge
    Being knowledgeable of EDS is an important step in taking control of your condition. Find a doctor who's experienced in the management of EDS and learn as much as you can about the type of EDS you have.
  • Tell Others
    Explain your condition to family members, friends and to your employer. Ask your employer if he or she can make any accommodations that you feel will make you a more productive worker. It's up to you how much information you divulge to your co-workers. You may want to prepare an appropriate response for people who ask questions.
  • Build Support
    Having a strong support network can help. Build up relationships with family and friends who are positive and caring. It may also help to talk to an unrelated third party, such as a medical social worker, counselor or clergy member. Some people find help by joining a support group for people with EDS or people with chronic illnesses.

Help Your Child Cope
Family members can play critical roles in helping a child cope with Ehlers-Danlos syndrome. As a parent, you may want to try the following:
  • Maintain Normalcy
    Treat your child, as much as possible, like other normal children. Ask others — grandparents, aunts, uncles — 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. Parents of children with EDS have sometimes encountered suspicions of child abuse because of frequent bruises and cuts. Make sure your child's teachers and other caregivers know about your child's condition. Review with them appropriate caregiving skills, particularly in situations such as a fall or injury.
  • Promote Activity
    Encourage your child to participate in physical activities, keeping in mind the recommendations of your child's doctor and physical therapist.
  • Find the Best Routine
    Work with your child's teachers and school administrators to make any necessary modifications in his or her schedule or responsibilities. These modifications may include giving your child extra time to move from class to class, providing him or her with an extra set of textbooks so that these books won't need to be carried home, and making arrangements for assignments to be sent home when your child misses school because of his or her condition.

Most people with Ehlers-Danlos syndrome are able to live a productive and fulfilling life, even with the limitations imposed by having EDS.
 
Article by Mayo Clinic Staff
April 19, 2008
web site by ~ Lynn Sanders