New Tools for Treating Those With Osteogenesis Imperfecta

Format: Booklet
Institute: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Osteogenesis imperfecta is a genetic disorder characterized by bones that break easily, often with little or no apparent cause. In the most severe cases, babies are born with an unstable neck, an unusually soft skull, and multiple fractures. They almost always die at or shortly after birth. In the mildest cases, people seem to have average life expectancy, but they experience muscle weakness, loose joints, flat feet, dislocations, sprains, and fractures.

To help health professionals who treat people with this serious disorder, the National Institutes of Health Osteoporosis and Related Bone Diseases ~ National Resource Center has added two guides for health professionals to its osteoporosis and bone health series. Osteogenesis Imperfecta: A Guide for Nurses and Therapeutic Strategies for Osteogenesis Imperfecta: A Guide for Physical Therapists and Occupational Therapists both offer guidance for health professionals on the care of patients with this musculoskeletal disorder.

The guide for nurses has separate sections on care for babies, children, teens, and adults, as well as information about proper nutrition, psychological support for patients and families, emergency care, and a variety of other topics. The guide for therapists describes in detail how patients can work toward the long-term goal of independence in all life functions. In addition to these two booklets, there are dozens of other publications now available in the NIAMS osteoporosis and bone health series.

Next Steps
You can view the entire National Resource Center osteoporosis and bone health series at www.niams.nih.gov/bone/index.htm. You can view Osteogenesis Imperfecta: A Guide for Nurses at www.niams.nih.gov/bone/hi/osteogenesis/oi_nurse_guide.htm. And you can view Therapeutic Strategies for Osteogenesis Imperfecta: A Guide for Physical Therapists and Occupational Therapists at www.niams.nih.gov/bone/hi/osteogenesis/oi_pt_ot_guide.htm.