Pediatric Fibrodysplasia Ossificans Progressiva (Myositis Ossificans) Follow-up

Updated: Oct 26, 2015
  • Author: Robert J Pignolo, MD, PhD; Chief Editor: Lawrence K Jung, MD  more...
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Follow-up

Deterrence/Prevention

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  • If a parent has fibrodysplasia ossificans progressiva (FOP), the chance that a child will have fibrodysplasia ossificans progressiva is 50%. In addition to the usual risks that any woman might encounter during pregnancy, a woman with fibrodysplasia ossificans progressiva has additional concerns that must be carefully considered, including substantial life-threatening risks to both the mother and child.
  • Present and future rehabilitation approaches should be focused on enhancing activities of daily living. Occupational therapy and vocational education consultations may be extremely useful. Passive range of motion must be avoided, as it likely leads to disease exacerbations.
  • Measures to prevent falls should be directed at modification of activity, improvement in household safety, use of ambulatory devices (such as a cane, if possible), and use of protective headgear.
  • Prophylactic measures to maximize pulmonary function, minimize respiratory compromise, and prevent influenza and pneumonia are helpful in decreasing the morbidity and mortality from thoracic insufficiency syndrome.
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Prognosis

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  • As heterotopic bone accumulates in fibrodysplasia ossificans progressiva, range of motion is progressively lost, leading to near complete immobility.
  • Patients with fibrodysplasia ossificans progressiva develop thoracic insufficiency syndrome (TIS) that can lead to life-threatening complications. Pneumonia and right-sided heart failure are the major life-threatening hazards that result from TIS in patients with fibrodysplasia ossificans progressiva.
  • The median age of survival is approximately 41 years, and death often results from complications of TIS.
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