Non-scarring epidermolysis bullosa: 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 difficulty breathing, severe weakness or confusion, collapse, or signs of a rapidly worsening infection.
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 prompt medical assessment for spreading redness, warmth, swelling, pus, worsening pain, fever, or an unpleasant smell from a wound.
These can be signs of infection.
A baby with unexplained or widespread blistering needs urgent medical assessment.
Blistering has several possible causes, and early specialist care can protect the skin and manage fluid or feeding problems.
Seek urgent help if mouth or throat blisters make swallowing difficult, if an eye becomes painful or blistered, or if there are signs of dehydration such as very little urine, marked drowsiness, or inability to drink.
3
Does any of this apply?
Book an appointment
Arrange routine medical or specialist advice if:
Blisters are becoming more frequent or difficult to manage
Wounds repeatedly reopen or are healing more slowly than usual
Pain or itching is disrupting sleep or daily activities
Thickened skin makes standing or walking difficult
Eating, growth, or weight is affected
You want genetic testing or advice about inheritance
Every sign above is quoted from the sofidex article on Non-scarring epidermolysis bullosa. If you are not sure, err upward — it is always reasonable to be checked.