Table 8.

Treatment of Manifestations in Individuals with Fibrodysplasia Ossificans Progressiva

Manifestation/ConcernTreatmentConsiderations/Other
Heterotopic ossification Targeted therapy (See Tables 6 & 7.)
Prevention of soft-tissue & muscle injury Avoid intramuscular injections.Routine DTP vaccinations are particularly harmful.
Avoid arterial punctures.Routine venipuncture poses minimal risk.
Biopsies of lesions are never indicated.Biopsies are likely to cause heterotopic ossification.
Precautions during dental care
  • Avoid overstretching of jaw.
  • Care w/local anesthesia
Fall-related injuries Fall prevention
  • Modification of activity
  • Improved household safety (e.g., install handrails, secure loose carpeting, remove objects from walkways, eliminate uneven flooring.)
  • Use of ambulatory devices
Reduce sequelae of fallsUse of protective headgear
Treatment following a fall
  • Prompt medical attention
  • Consider head & neck injuries to be serious until proven otherwise.
  • Consider prophylactic corticosteroid use.
Feeding difficulties due to jaw ankylosis when heterotopic ossification affects jaw region Referral to dietician to consider supplemental intake or modified food consistency
Dental care
  • Preventative dental care from a young age
  • Consult FOP expert prior to dental procedures.
  • Dental care may be affected by spontaneous or post-traumatic jaw ankylosis.
  • Consider corticosteroids for prophylaxis prior to dental & surgical procedures.
Orthodontic concerns Orthodontic treatment by practitioner w/experience w/FOP
Requirement for anesthesia Consult w/expert anesthetist w/experience w/FOP prior to elective anesthesia.
  • If general anesthesia is required, an awake intubation by nasotracheal fiber-optic technique should be performed because of neck malformations, jaw ankylosis, sensitive airway, & risk of an obstructing neck flare-up.
  • Highly skilled FOP-aware anesthesiologists should be present for all elective intubations.
Mechanical respiratory difficulties incl thoracic insufficiency syndrome
  • Singing, swimming, incentive spirometry
  • Positive pressure ventilation when indicated
  • Avoid respiratory infections.
  • Consider subcutaneous vaccination for influenza & pneumococcus in the proband. 1
  • Recommend pertussis & influenza vaccination in family members. 2
  • Avoid supplemental oxygen, which can suppress respiratory drive.
Painful, recurrent soft-tissue swelling (flare-ups)
  • NSAIDs or COX-2 inhibitors (oral or topical)
  • Other anti-inflammatory medications including mast cell stabilizers, leukotriene inhibitors
  • Consider corticosteroids, particularly for flare-ups affecting the submandibular region or jaw, major joints, & after significant soft-tissue trauma. 1
  • Consider oral corticosteroids for prophylaxis prior to dental & surgical procedures. 1
  • Consider prophylactic treatment to prevent gastrointestinal complications due to NSAIDs or COX-2 inhibitors.
  • Avoid narcotic analgesia if possible.
  • No definitive evidence for use of bisphosphonates or imatinib
Scalp nodules No treatment requiredUsually spontaneously regress
Scoliosis Conservative managementAvoid traditional operative approaches.
Corticosteroid-induced osteopenia Consider bisphosphonates according to standard treatment protocolsBisphosphonates may play role in managing soft-tissue swellings. 1
Fractures Consult w/FOP expert
  • Fractures usually heal w/minimal heterotopic bone formation.
  • Avoid open reduction & internal fixation, which can precipitate heterotopic ossification.
Conductive hearing impairment Hearing aids & appliances
Renal stones
  • Encourage fluid intake (1.5-2 L/day).
  • Avoid high-protein & high-salt diets.
Problems w/ADL OT
Mobility issues Warm water hydrotherapyAvoid passive joint movement.
Lymphedema
  • Elevate legs during sleep & while recumbent.
  • DVT prophylaxis
  • Supportive stockings while avoiding traumatic compression
Depression Psychological support

ADL = activities of daily living; DVT = deep vein thrombosis; NSAID = nonsteroidal anti-inflammatory drug; OT = occupational therapy

1.
2.

Anti-influenza medication (oseltamivir) at first sign of influenza-like illness, while contacting medical practitioner

From: Fibrodysplasia Ossificans Progressiva

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