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Page 3 How Can the Family Help a Child Live Well With JRA? JRA affects the entire family who must cope with the special challenges of this disease. JRA can strain a child's participation in social and after-school activities and make school work more difficult. There are several things that family members can do to help the child do well physically and emotionally. · Treat the child as normally as possible. · Ensure that the child receives appropriate medical care and follows the doctor's instructions. Many treatment options are available, and because JRA is different in each child, what works for one may not work for another. If the medications that the doctor prescribes do not relieve symptoms or if they cause unpleasant side effects, patients and parents should discuss other choices with their doctor. A person with JRA can be more active when symptoms are controlled. · Encourage exercise and physical therapy for the child. For many young people, exercise and physical therapy play important roles in treating JRA. Parents can arrange for children to participate in activities that the doctor recommends. During symptom-free periods, many doctors suggest playing team sports or doing other activities to help keep the joints strong and flexible and to provide play time with other children and encourage appropriate social development. · Work closely with the school to develop a suitable lesson plan for the child and to educate the teacher and the child's classmates about JRA. (See the end of this fact sheet for information about Kids on the Block, Inc., a program that uses puppets to illustrate how juvenile arthritis can affect school, sports, friends, and family.) Some children with JRA may be absent from school for prolonged periods and need to have the teacher send assignments home. Some minor changes such as an extra set of books, or leaving class a few minutes early to get to the next class on time can be a great help. With proper attention, most children progress normally through school. · Explain to the child that getting JRA is nobody's fault. Some children believe that JRA is a punishment for something they did. · Consider joining a support group. The American Juvenile Arthritis Organization runs support groups for people with JRA and their families. Support group meetings provide the chance to talk to other young people and parents of children with JRA and may help a child and the family cope with the condition. Do Children With Juvenile Rheumatoid Arthritis Have To Limit Activities? Although pain sometimes limits physical activity, exercise is important to reduce the symptoms of JRA and maintain function and range of motion of the joints. Most children with JRA can take part fully in physical activities and sports when their symptoms are under control. During a disease flare, however, the doctor may advise limiting certain activities depending on the joints involved. Once the flare is over, a child can start regular activities again. Swimming is particularly useful because it uses many joints and muscles without putting weight on the joints. A doctor or physical therapist can recommend exercises and activities. What Are Researchers Trying To Learn About Juvenile Rheumatoid Arthritis? Scientists are investigating the possible causes of JRA. Researchers suspect that both genetic and environmental factors are involved in development of the disease and they are studying these factors in detail. To help explore the role of genetics, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has established a research registry for families in which two or more siblings have JRA. NIAMS also funds a Multipurpose Arthritis and Musculoskeletal Diseases Center (MAMDC) that specializes in research on pediatric rheumatic diseases including JRA. Research doctors are continuing to try to improve existing treatments and find new medicines that will work better with fewer side effects. For example, researchers are studying the long-term effects of the use of methotrexate in children. Where Can People Get More Information About the Research Registry and MAMDC? For
more information about the Research Registry, contact: Edward Giannini,
MD Where Can People Get More Information About Juvenile Rheumatoid Arthritis? American
Juvenile Arthritis Organization (AJAO) National
Institute of Arthritis and Musculoskeletal and Skin Diseases Information
Clearinghouse NIAMS
Fast Facts: health information available 24 hours a day by fax,
call 301/881-2731 from a fax machine telephone. National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information devoted to childhood rheumatic diseases. The organization has information about JRA, support groups, and pediatric rheumatology centers around the country. Kids
on the Block, Inc. Kids on the Block, Inc., is an educational program that uses puppets to show how JRA can affect school, sports, friends, and family. A package is available (for a fee) that includes a set of large puppets that represent a diverse group of children, as well as audiocassettes, a training guide, four different program scripts, props, followup activities, and other resources. The program is designed so that anyone can be puppeteer, and workshops to train puppeteers are available. Acknowledgments
The National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse (NAMSIC) is a public service sponsored by the NIAMS that provides health information and information sources. The NIAMS, a part of the National Institutes of Health (NIH), leads the Federal medical research effort in arthritis and musculoskeletal and skin diseases. The NIAMS sponsors research and research training throughout the United States as well as on the NIH campus in Bethesda, MD, and disseminates health and research information. Reprinted
with permission from
NIAMS Fast Facts: health information available 24 hours a day by
fax, call 301/881-2731 from a fax machine telephone.
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