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 difficulty breathing, blue or grey lips, collapse, or inability to speak
A serious infusion reaction with breathing difficulty, facial swelling, or fainting
Sudden weakness, loss of movement, or major loss of sensation
New loss of bladder or bowel control with weakness or back or neck symptoms
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
Seek urgent medical assessment for new or worsening arm or leg weakness, numbness, frequent falls, loss of balance, or a clear change in walking.
These may be signs of spinal cord pressure.
Prompt assessment is also appropriate for rapidly worsening breathlessness, repeated choking, unusually long pauses in breathing during sleep, or chest pain.
3
Does any of this apply?
Book an appointment
Routine follow-up should address gradual changes such as increasing pain, reduced walking distance, louder snoring, hearing difficulty, vision changes, dental problems, or trouble with daily activities.
These are not usually emergencies, but they may show that monitoring or support needs to change.
Every sign above is quoted from the sofidex article on Mucopolysaccharidosis type IV. If you are not sure, err upward — it is always reasonable to be checked.