Health Information

Osteogenesis Imperfecta

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Updated December 2005

Talking With Your Primary Care Doctor: A Guide for Persons With OI


People with osteogenesis imperfecta (OI) usually require the services of a health-care team that includes a primary-care physician and several specialists. The primary-care doctor is concerned with the overall health of each patient. For children, the pediatrician or family physician also deals with growth and development issues. Children and adults with OI have the same general health needs as other people. For example, children with OI need immunizations and may get the usual childhood illnesses. Adults with OI may face minor illnesses and have the same risks as other adults for serious health problems, such as diabetes, cancer, and heart disease.

General Principles for Good Communication

  • Keep detailed medical records. Keep lists of fractures, how they occurred, and how they were treated. Include developmental milestones; immunizations; illnesses; surgeries; medical treatments; medicines; allergies; urine calcium; bone density; other routine tests; and complications from surgery, anesthesia, or treatments.
  • Keep a brief summary of key points in the medical history to share with a new doctor or when traveling. Include surgeries and complications.
  • Find a doctor who listens to you and who makes you feel comfortable.
  • Find a doctor who treats you with respect and is interested in the information on OI that you provide.
  • Find a knowledgeable and skilled doctor who has some expertise with OI, or is willing to consult medical literature and specialists to acquire expertise.
  • Plan ahead for emergencies. Include information about how to contact the doctor, which hospital to go to, what to do on a weekend or holiday, and transportation. Discuss with your doctor what to do if he or she is unavailable or on vacation.
  • Work in partnership with your doctor: Follow through on prescribed medications or therapies and provide complete and honest reports to the doctor.
  • When you answer your doctor's questions, do not exaggerate, deny, or deliberately omit information.
  • Be an attentive listener.

Prepare for the Appointment

  • Record any symptoms. Be specific about date, time, location and type of pain, and body temperature. It can help to keep notes on a calendar or in a diary.
  • Prepare a list of questions.
  • Ask questions in order of importance. Never leave the most important one for last.
  • Bring paper and pencil to write down the doctor's answers.
  • Maintain a list of all drugs, drug dosage, vitamin and mineral supplements, and alternative treatments you are using and provide this information to your doctor at each visit.
  • Bring copies of any resources you have found, including medical literature or Internet information.

The following list of questions is not a script. It is a list of ideas to help you have a productive conversation with your doctor. Review this list before your appointment and select the questions that are important to you. Be sure to listen carefully during your appointment. Your doctor may answer many of these questions before you ask them.

Questions about symptoms:

  • If the doctor dismisses a symptom by saying, "It's probably the OI," ask how the symptom would be evaluated if you did not have OI.
  • If a symptom is persistent or troubling, ask the doctor if it is being treated in the same manner as it would for a patient who does not have OI.

Questions about your general health:

  • What can I do in terms of diet that will help me stay healthy?
  • What can I do in terms of exercise that will help me stay healthy?
  • What other steps toward a healthy lifestyle do you recommend?

After hearing a diagnosis:

  • What does this mean?
  • What are the possible treatments?
  • What can I expect might happen next? (What is the prognosis?)
  • What can I do to prevent this from happening?
  • What can I do to prevent this from happening again?
  • Is it necessary to see a specialist?

When medications, tests, or treatments are prescribed:

  • What is the exact name of the drug, test, or treatment?
  • Why is it needed?
  • Will my size influence the dosage amount you prescribe?
  • What are the costs, risks, and benefits?
  • Are there any alternatives?
  • What will happen to me if nothing is done?
  • How do I take this medicine?
  • How do I prepare for this test?
  • When will I get the test results?
  • Will the orthopaedic rods and other implants in my body interfere with this test? (Certain types of rods interfere with an MRI.)
  • Will this treatment affect my bone mineral density?
  • How should I take care of myself at home?
  • What warning signs or side effects should be watched for?

When there is a referral to a specialist:

  • What will the specialist do regarding this medical problem?
  • Why is this person or type of doctor being recommended?
  • Will you (the primary-care physician) send the necessary records, test results, or x rays directly to the specialist?
  • Will the specialist keep you (the primary-care physician) informed about any new treatments?


  • How can I reach you if I have questions later?
  • When should I return for my next appointment?


For information on how to talk to your orthopaedist and other topics on osteogenesis imperfecta, contact:

  • NIH Osteoporosis and Related Bone Diseases ~ National Resource Center

    2 AMS Circle
    Bethesda,  MD 20892-3676
    Phone: 202–223–0344
    Toll Free: 800–624–BONE
    TTY: 202-466-4315
    Fax: 202-293-2356

  • Osteogenesis Imperfecta Foundation

    804 West Diamond Ave., Suite 210
    Gaithersburg,  MD 20878
    Phone: 301-947-0083
    Toll Free: 800-981-2663
    Fax: 301-947-0456

For Your Information

For updates and for any questions about any medications you are taking, please contact the U.S. Food and Drug Administration at:

U.S. Food and Drug Administration

Toll Free: 888-INFO-FDA (888-463-6332)

The National Resource Center acknowledges the assistance of the Osteogenesis Imperfecta Foundation in the preparation of this publication.

NIH Osteoporosis and Related Bone Diseases ~ National Resource Center

2 AMS Circle
Bethesda,  MD 20892-3676
Phone: 202–223–0344
Toll Free: 800–624–BONE
TTY: 202-466-4315
Fax: 202-293-2356

The NIH Osteoporosis and Related Bone Diseases ~ National Resource Center provides patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases. The mission of NIH ORBD~NRC is to expand awareness and enhance knowledge and understanding of the prevention, early detection, and treatment of these diseases as well as strategies for coping with them.

The NIH Osteoporosis and Related Bone Diseases ~ National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases with contributions from:

The National Institutes of Health (NIH) is a component of the U.S. Department of Health and Human Services (DHHS).

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