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How Osteogenesis Imperfecta Works

Living with Osteogenesis Imperfecta

The challenges to daily life associated with osteogenesis imperfecta vary greatly from person to person, depending on condition type, severity of disease and the patient's age. The right balance of treatments can often help a person with OI live a reasonably normal life.

Parents of children with OI face a number of challenges. Care must be taken when handling a child with OI. However, parents also must not withhold physical affection or prevent the appropriate levels of exertion needed for the child to develop bone mass and muscle strength. Often, parents must deal with the fact that painful fractures may be unavoidable. In many cases, the number of breaks greatly diminishes after puberty ends.

False allegations of child abuse are frequent problems for these parents, especially when milder cases of the disorder go undiagnosed. Not only do bones break more easily for children with OI, but these children often bruise more easily due to their smooth, thin skin. School officials or law-enforcement officers unaware of the child's medical condition could easily misconstrue injuries sustained during normal, everyday activities as evidence of child abuse. To help prevent these false allegations, parents of children with OI should always keep documentation about their child's condition on hand and notify school officials.

Adults with milder cases of OI often face fewer fractures, but their symptoms still place limits on their lifestyles. The more rigorous the activity, the more likely it will result in injury. The more serious the fracture (or fractures), the more time the patient must spend recovering muscle mass lost from immobility. This also applies to pregnancy -- a pregnant woman with mild OI may experience few complications. Expectant mothers with type I and type IV may experience loose joints, reduced mobility, bone pain and dental problems. More debilitating forms of OI may lead to severe complications for the mother, including heart and lung difficulties and premature delivery.

Men with OI usually don't experience increased fractures as they age. Menopausal women, on the other hand, often suffer from osteoporosis, a condition in which both the calcium and collagen levels in bone decrease, resulting in less bone mass. Women with OI already have depleted or weak collagen levels, and osteoporosis only weakens their fragile bones further. To help combat these effects, doctors frequently prescribe menopausal women hormone replacement therapy or estrogen replacement therapy to increase hormone levels.

For more information on osteogenesis imperfecta and its support organizations, visit the links on the next page.