Mayo Clinic Health Manager
Get free personalized health guidance for you and your family.
Get Started
About our e-newsletters
- Free e-newsletters
- Mayo Clinic expertise
- We do not share your e-mail address
Housecall, our weekly general-interest e-newsletter, keeps you up to date on a wide variety of health topics with timely, reliable, practical information, recipes, blogs, questions and answers with Mayo Clinic experts and more. Our biweekly topic-specific e-newsletters also include blogs, questions and answers with Mayo Clinic experts, and other useful information that will help you manage your health.
Housecall Archives
Mayo Clinic Housecall
Stay up to date on the latest health information.
What you get
- Free weekly e-newsletter
- Mayo Clinic expertise
- Recipes, tools and other helpful information
- We do not share your e-mail address
Coping and support
By Mayo Clinic staffCoping 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. The Ehlers-Danlos National Foundation's Web site has information on local and regional support groups.
Helping 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.
