English

I have osteogenesis imperfecta (OI, brittle bones). This means that my bones are fragile. OI not only affects the skeleton but the connective tissue in general. Please, consult me/my parents/my companion before you move, transport, examine or treat me; follow my/their directions on how to handle me safely. 

We wish to remind you about the following:

  • In osteogenesis imperfecta fractures can occur easily, or even spontaneously.
  • Symptoms of fractures are not always obvious; pain often indicates a fracture.
  • Just looking for signs of fractures, e.g. abnormal mobility or crepitation, can cause a fracture.
  • The safest way to determine or exclude a fracture is by X-ray examination (see below).
  • As a rule fractures are painful.
  • In case of pain, even without a diagnosed fracture, treatment should, sometimes, be the same as for a fracture.
  • Adequate analgesia is advisable, in children as well as adults.
  • Dosing for medications and anesthesia should be based on the person’s size rather than age.
  • An analgesic and/or a night sedative are recommended the first few days after a fracture.
  • Lightweight materials are preferred for immobilisation.
  • Patients with OI should be mobilised as soon as possible.
  • Please, contact the treating specialist when hospitalisation or surgery is necessary.
  • Many patients with OI have a hearing problem.
X-ray examination:
  • In osteogenesis imperfecta the bones may be demineralised. Lower radiation intensity is usually appropriate (as in osteoporosis) to avoid needless repeat films.
  • Excessive movements and needless lifting should be avoided.
  • Patients or their parents/companions are often experienced by previous examinations. They can be helpful in finding the right position for X-rays to be taken.
  • A lead shield for the reproductive organs should be used.

Surgery and Anaesthesia:

  • Carefully transfer the person/patient to and from the operating table, supporting him/her well.
  • Be aware of existing deformities or contractures when positioning the person/patient on the operating table.
  • Bend the head gently backwards for intubation, minimizing the risk of fracturing cervical vertebrae; be aware of the vulnerable mucosa of the trachea. The teeth are often fragile as well.

For other languages: https://oife.org/news-resources/oife-passport/

 

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