November 24, 2015
Osteogenesis Imperfecta (OI)
Life with the debilitating condition, osteogenesis imperfecta (OI), can be challenging. Characterized by fragile bones that break easily, weak muscles, and loose ligaments, osteogenesis imperfecta is a genetic bone disorder – also known as “brittle bone disease.” As the name implies, children with osteogenesis imperfecta can suffer fractures from some of the simplest day-to-day activities; changing a diaper, being lifted or burped, or beginning to stand and walk can all cause injury. For parents, this can be scary and overwhelming.
Osteogenesis imperfecta is a complicated, variable, and rare disorder with approximately 20,000 to 40,000 known cases in the United States. Typically, osteogenesis imperfecta is diagnosed during pregnancy or at birth; however, some cases can go undetected until a broken bone occurs from little to no trauma. Those diagnosed with osteogenesis imperfecta will experience frequent broken bones from infancy through puberty. Although the frequency generally decreases in their young adult years, it may increase again later in life.
Despite the challenges, many of those diagnosed are still able to live productive and fulfilling lives by learning key strategies for managing their condition. Years ago, parents and caretakers were advised to protect children with osteogenesis imperfecta by keeping them isolated from contact and physical activities. These methods, while well intentioned, unfortunately did not prevent injuries and actually may have hindered the development and achievement of independent functioning.
Physical activity is an important part of managing osteogenesis imperfecta and improving the quality of life for both children and adults. Research has shown not only are there general health improvements, such as cardiovascular fitness, mental alertness, improved sleep quality, weight management, improved ability to handle infection, and many others, but there are also improvements to bone density, physical function, psychological and social well-being, and self-confidence – all of which support independence in daily activities and social interaction with peers.
Developing trusting relationships with pediatricians and orthopedic surgeons is important for those charged with the care of an individual diagnosed with osteogenesis imperfecta; in addition, it may also be beneficial to look into a physical therapy program as a means for safe and healthy exercise. Physical therapy is a great way to manage symptoms and minimize injuries while also increasing independence. Physical and occupational therapists can help those with osteogenesis imperfecta develop muscle tone, strength, and cognitive skills to help prevent problems as well as restore function.
At Epic Health Services, our therapy program concentrates on increasing mobility, muscle strengthening, range of motion, and functional motor skills. Because we recognize each person is unique, we approach physical therapy with a focus on individualized care. It is our goal to continuously improve motor skill development and prevent osteogenesis imperfecta related muscle weakness from impeding the development and quality of life of our patients. We encourage good health practices and strive to grant independence to patients in all areas: education, self-care, social and recreational function.
Those born with this disorder are affected throughout his or her lifetime; however, with medical management and supportive care, the majority of people who have osteogenesis imperfecta are able to lead healthy, productive lives.
It is never too late to begin therapy, no matter the age! Our services begin at infancy and can continue through adulthood. For more information on our physical therapy services, both pediatric therapy and adult therapy, view our services or contact us.