Osteogenesis Imperfecta

Osteogenesis Imperfecta is a genetic disorder that is characterized by bones that break easily with little or no cause. It is usually the result of an underlying problem with the way the body produces collagen, which causes the bones and cartilage to be soft and brittle as well as causing ligaments and skin to be hyperextensible and elastic.

This condition occurs very infrequently with prevalence rate being 1 in 20,000 live births, with equal rates between males and females and ethnic/racial groups.The expression of symptoms can vary and research has indicated four unique subtypes.

There currently is no cure but it can be managed through non-surgical treatments (e.g., physical therapy, bracing, splints), surgical, and medication to help with pain symptoms. In addition to these interventions, research has shown the positive impact that psychologists have in helping individuals with Osteogenesis Imperfecta and their families coping with physical pain and other psychosocial aspects of living with this disorder.

Psychologist’s Role

  • Pain management
  • Related Behavioral Difficulties
  • Body Awareness/Psycho-Educational
  • Parent guidance/Family Therapy
    • Coping with initial reactions of guilt, bereavement related to loss of “normal/healthy” child
    • Explaining situation/restrictions with sibling
    • Fostering independence in child with OI
    • Preparing for school and other extracurricular activities and teaching others about OI

Dr. Jeremy Devlin is our clinician with expertise working with children and young adults with OI.

Additional resources and information can be found on the Osteogenesis Imperfecta Foundation Web Site.

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