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Coping and support
By Mayo Clinic staffCoping 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 with the challenges of Ehlers-Danlos syndrome:
- Increase your knowledge. Knowing more about EDS can help you take 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 your employer. Ask your employer about 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 appropriate responses for people who ask questions.
- Build a support system. Cultivate 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. The Ehlers-Danlos National Foundation's Web site has information on local and regional support groups.
Helping your child cope
If you are a parent of a child with EDS, consider these suggestions to help your child:
- Maintain normalcy. As much as possible, treat your child like normal children. Ask others — grandparents, aunts, uncles, teachers — to do the same.
- Be open. Allow your child to express his or her feelings about having EDS, 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 the event of a fall or injury.
- Promote activity. Allow 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 may also have recommendations.
- 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.
References
- Lawrence EJ. The clinical presentation of Ehlers-Danlos syndrome. Advances in Neonatal Care. 2005;5:301.
- Whitelaw SE. Ehlers-Danlos syndrome, classical type: Case management. Dermatology Nursing. 2004;16:433.
- Sheon RP. Clinical manifestations and treatment of the hypermobility syndrome. http://www.uptodate.com/home/index.html. Accessed Jan. 27, 2010.
- Tong I. Ehlers-Danlos syndrome. In: Ferri FF. Ferri's Clinical Advisor 2010. Philadelphia, Pa: Mosby Elsevier; 2009. http://www.mdconsult.com/das/book/body/188281291-3/965853179/2088/208.html#4-u1.0-B978-0-323-05609-0..00014-9--sc0025_4217. Accessed Feb. 10, 2010.
- Volkov N, et al. Ehlers-Danlos syndrome: Insights on obstetric aspects. Obstetrical & Gynecological Survey. 2006;62:51.
- Voermans NC, et al. Neuromuscular involvement in various types of Ehlers-Danlos syndrome. Annals of Neurology. 2009;65:687.
- Krakow D. Heritable diseases of connective tissue. In: Firestein GS, et al. Kelley's Textbook of Rheumatology. 8th ed. Philadelphia, Pa.: W.B. Saunders; 2008. http://www.mdconsult.com/das/book/body/188281291-3/965853179/1807/728.html. Accessed March 10, 2010
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