Mystery Monday: Have you heard of Osteogenesis Imperfecta?
This week Mystery Monday is focusing on Osteogenesis Imperfecta! Thank you so much to Osteogenesis Imperfecta Federation Europe (OIFE) for the fantastic resources!
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What is Osteogenesis Imperfecta?
Osteogenesis Imperfecta, also known as brittle bone disease, is a genetic condition characterized by fragile and easily fractured bones. It is caused by a defect in the production of collagen, a protein that provides strength and structure to bones. Individuals with osteogenesis imperfecta may experience frequent bone fractures, often from minor trauma or even without apparent cause. In addition to bone fragility, this condition can also affect other connective tissues, leading to dental problems, hearing loss, and joint abnormalities. The severity of osteogenesis imperfecta can vary widely, ranging from mild cases with few fractures to severe forms with multiple fractures and significant skeletal deformities. Treatment primarily focuses on managing symptoms and preventing fractures, involving a multidisciplinary approach that may include physical therapy, medications, assistive devices, and surgical interventions. Supportive care and early intervention are essential for optimizing the quality of life for individuals with osteogenesis imperfecta.
“OI may lead to physical disability requiring the use of walking sticks, walking frames and wheelchairs. But OI can also be invisible causing lack of understanding. Even when there are no fractures there will be other problems connected to the condition; such as the ligaments stretch more easily, joint hypermobility can significantly affect the quality of life as it results in fatigue of many muscle groups. People with OI often face challenges to be fully included in school, work and social life.”-OIFE
Do you want to learn more?
Visit www.oife.org for excellent additional learning resources. Learn how you can get involved with OIFE below: