frequent life-threatening infections and lengthy hospital stays are stressful for both patients and their families. It is important for CGD patients and their parents to talk with a hospital socail worker, who can arrange for needed therapy as well as arrange for tutoring or any other necessary community support services. Clinical social workers provide psychotherapy for patients coping with chronic illness.
It is not unusual for patients and their families affected by CGD to find themselves feeling afraid, angry, frustrated, or depressed. Parents of children with CGD may feel guilty about passing the disease on to their child or blame themselves for the infections their child experiences. Parents are also often torn between the needs of their child with CGD and the needs of their other children or the demands on their jobs. These competing demands can foster additional stress.
Siblings of children with CGD may become jealous of the attention given to the child who is sick. They may feel resentful and become increasingly demanding and dependent. Siblings should be encouraged to talk about their feelings and worries. Fambout their feelings and worries. Familty couseling can help work through these and other problems that may arise among family members.
Patients and their families can particiapte in support groups for people whose lives are affected by chronic disease. Many hospitals offer support groups; if not, a hospital social worker may be able to locate such a group in the community.
Relaxation therapy can also help reduce stress. A number of relaxation techniques such as meditation, visual imagery, and therapeutic massage can relieve physical and emotional tension and promote a positive outlook. Many hospitals offer recreational therapy, such as crafts or playing musical instruments, that can make hospitals stays more pleasant and help relieve boredom.
Additional resources are available for people with CGD and their families. (See the page For further information at the end of this document for organizations to contact.)
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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Public Health Service
National Institute of Health
National Institute of Allergy and Infectious Diseases
Division of Intramural Research
Prepared by the NIAID
Office of Communications