How is it living with Osteogenesis Imperfecta in Adulthood?

By  ,  National Institute of Health
Jan 10, 2013

The Health Care Team

An important part of managing OI and staying healthy is assembling a good health care team and having a solid working relationship with one’s primary care doctor and medical specialists. The medical team may include an orthopaedist and an endocrinologist (doctors who specialize in diagnosing and treating conditions affecting bones and the endocrine system, respectively). The team also may also include anutritionist as well as rehabilitation professionals. Consultation with a pulmonologist (a doctor who specializes in lung diseases) and a neurologist (a doctor who specializes in caring for the nervous system) also may be needed.

Strategies for developing strong relationships with your health care team include keeping good records, keeping up to date on new information about OI and available treatments, and planning ahead for emergencies. Being a good health-care consumer involves providing the doctor with accurate information about your health, listening carefully to the doctor's instructions, and asking questions until the information is fully understood.

People with OI who are small in stature may want to suggest that their doctors obtain a copy of a pediatric dose chart to keep in their medical file for reference. A pediatric blood pressure cuff and smaller instruments for gynecological exams also may be appropriate. Those with OI may want to provide any new doctor with a list of all rods or other surgical implants, because these may interfere with x-rays or magnetic resonance imaging (MRI). In many cases, MRI exams can be performed in the presence of rods.



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