Fibrodysplasia ossificans progressiva: when to get help
Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911
Call emergency services for:
Severe or rapidly worsening difficulty breathing
Blue or grey lips or skin
Inability to swallow saliva or signs of choking
New confusion, fainting, or marked drowsiness
A severe allergic reaction after medicine
If possible, carry an emergency information card describing FOP, airway concerns, and potentially harmful procedures.
Emergency treatment should not be delayed when breathing or life is at risk.
Other emergency signs, for anyone
Someone who is struggling to breathe, gasping, choking, or cannot get words out
Someone who has chest pain, tightness or pressure lasting more than a few minutes
Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
Someone who is unconscious, or cannot be woken
Someone who is bleeding heavily and it will not stop with firm pressure
Someone who has had a seizure that will not stop, or does not wake up afterwards
Someone who has lips or skin that look pale, blue, grey or blotchy
Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen today
Contact your FOP or medical team promptly after a new flare-up, significant pain, reduced movement, fall, or injury.
Early advice may affect how a major flare-up is managed.
Seek urgent medical assessment after a serious fall, head injury, fracture, or major wound.
Tell the medical team that you have FOP before injections, surgery, airway procedures, or attempts to move a stiff joint.
3
Does any of this apply?
Book an appointment
Arrange routine follow-up for increasing stiffness, equipment problems, hearing changes, pressure areas, dental concerns, or difficulty maintaining weight.
Every sign above is quoted from the sofidex article on Fibrodysplasia ossificans progressiva. If you are not sure, err upward — it is always reasonable to be checked.