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FOP is a genetic disorder in which bone forms in muscles, tendons, ligaments and other connective tissues.

When treating a patient with FOP, MINIMISE RISK with EXTRA CARE IN ALL SITUATIONS

To minimise the risk of FOP flares and subsequent extra bone growth (which can be unpredictable or caused by trauma), take extra care in all situations.

Avoid triggers such as deep invasive procedures, repeated or excessive blood pressure cuff inflation, and forced joint movement or stress.

Ensure medical care minimises trauma by, for example, using experienced staff for blood draws and reducing the frequency of blood pressure measurements to the minimum required.

However, in all cases: protect the life of the patient as though FOP was not an issue

FOP is accelerated by trauma

Any attempt to remove the unwanted bone results in explosive episodes of new bone growth.  Immunisations can also trigger additional bone growth.

Evaluate the emergency and protect the life of the patient as if FOP were not an issue.

Please always follow these emergency guidelines.  If time permits, consult a specialist regarding potential risks of any surgical or medical interventions being considered.

Please refer to the International Clinical Council for FOP’s Medical Guidelines whenever time permits.

FOP Treatment Guidelines

 

 

Emergency guidelines for paramedics, first responders, physicians, and A&E staff

Emergency Guidelines July 2024

 

 

In all cases: protect the life of the patient as though FOP was not an issue

Where possible, follow these guidelines, along with the treatment guidelines.  Any unnecessary physical trauma to the patient can cause irreparable restrictions to their body and movements.

 

1. Avoid deep tissue trauma

Including intramuscular (IM) injections, if possible.

2. Stabilize & treat

NO IM injections but venepuncture, subcutaneous and intravenous medications are okay.

3. Take intubation precautions

Protect the jaw and get expert anaesthesia assistance since the jaw and neck may be completely or partially locked.  If airway management is needed, the preferred approach is naso-trachael intubation with fibre-optic guidance.  Many people with FOP have restricted jaw and neck mobility, so intubation must be done in as gentle a fashion as possible.  Follow intubation with a course of steroids (prednisolone 2mg/kg/day for 4 days) to prevent fatal airway swelling from the trauma.

4. Consult expert doctors

This is strongly recommended regarding the potential risks of any surgical or medical interventions being considered.

5. Consider administering prophylactic (precautionary) steroids in cases of major trauma

Emergency Medical Contacts

Professor Richard Keen & Dr Judith Bubbear

FOP Specialists

Royal National Orthopaedic Hospital Stanmore, London

020 3947 0056
rno-tr.metabolicsecretary@nhs.net

Dr Alex Chesover

Paediatric FOP Specialist

Royal National Orthopaedic Hospital Stanmore, London

020 8909 5871
Secretary: zohra.patel2@nhs.net

RNOH Clinical Nurse Specialist Team

FOP Specialist Nurse Team

Royal National Orthopaedic Hospital Stanmore, London

rnoh.metaboliccns@nhs.net

Paediatric FOP Clinical Nurse Specialist Email: zohra.patel2@nhs.net

Professor Fred Kaplan

FOP Specialist

University of Philadelphia, Pennsylvania, USA

frederick.kaplan@uphs.upenn.edu

Professor Robert Pignolo

FOP Specialist

Department of Medicine Mayo Clinic School of Medicine, Minnesota, USA

Pignolo.Robert@mayo.edu