Neurodegeneration with brain iron accumulation: 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 difficulty breathing
Choking with an ongoing blocked airway
Blue or grey lips or skin
A seizure lasting longer than expected or repeated seizures without recovery
Sudden loss of consciousness or inability to wake normally
A serious injury after a fall
These emergency signs are not unique to NBIA, but they require immediate care.
And for anyone, someone who:
has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
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 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 help if swallowing suddenly becomes much worse, choking keeps happening, or there are signs of a chest infection after aspiration, such as fever, coughing, breathing discomfort, or unusual sleepiness.
And for anyone, someone who:
has a new severe headache unlike any they have had before
3
Does any of this apply?
Book an appointment
Arrange routine medical review if you notice a gradual change in walking, falls, muscle stiffness, involuntary movements, speech, swallowing, vision, behavior, sleep, or ability to manage daily activities.
New pain, weight loss, feeding difficulty, or problems with equipment also deserve timely assessment.