Ehlers-Danlos Syndrome.
Last updated Friday, February 18, 2005
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Coping
Strategies for coping
If you or your child has EDS, you know that it may present many challenges.
Adults and children may initially react with feelings of fear, anger or
depression. Children may also feel self-conscious about having the
disorder. Try to remember that it often takes time to adjust to having
a chronic (long-lasting) disorder, but that many people with
Ehlers-Danlos syndrome are able to live full, relatively active lives.
If you have EDS you might have concerns about managing pain,
maintaining independence, financial strain or family worries.
Discussing your problems and learning new ways to manage daily
activities will help you cope more effectively. Your family may be one
of your best sources of support. Discuss these issues with them, and
ask for their support.
It is important that parents discuss their child's symptoms
with teachers, neighbors, relatives, baby-sitters and friends. They
need to understand that cuts and bruises are common features of the
Ehlers-Danlos syndromes, and not signs of child abuse. They also need
to know about the following:
- The degree to which your child can participate
in physical education classes, playground and other recreational or
special activities.
- Medications your child must take during the day.
- Routine precautions such as:
- discouraging your child from overextending his or her joints as entertainment for siblings and other children
- avoiding rough-housing or wrestling with siblings and other children
- joint protection techniques and other safety precautions
Although children with EDS may need special protection, they also need
to play and have friends. Involve your children in activities they can
safely enjoy. Ehlers-Danlos syndrome does not affect intelligence, but
medical problems may interfere with progress in school or the child's
social or psychological adjustment.
Children with disabilities have legal rights to a free and
appropriate public education, along with special services. For further
information about special needs of children and educational rights,
consult our article on juvenile arthritis.
For more information on parent advocacy, contact your local chapter of the Arthritis Foundation or the American Juvenile Arthritis Organization (AJAO).
Asking for help
You might find it helpful to talk with a health professional such as a medical social worker,
psychologist, genetic counselor, or clergyman about your illness and how it affects you and your
family. Ask your doctor for a referral or contact your local church or family social service agency.
Many people gain support by sharing their concerns with other people
who have the disorder. The
Ehlers-Danlos National Foundation can provide you with names of both
children and adults with EDS
who live in your area. Children, especially, may wish to talk to other
children who have EDS.
Support services exist for people who may be more severely disabled.
For more information, contact the State Crippled Children's Services,
Department of Vocational Rehabilitation or the Social Security
Administration's Supplemental and Disability Insurance Income Program.
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