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Warning-sign checks

Bullosa hereditaria: 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. 1

    Is any of this happening now?

    Call 911

    Call emergency services for trouble breathing, blue or gray lips, severe chest symptoms, fainting, confusion, or a rapidly worsening illness.

    These are emergency concerns rather than routine EB follow-up.

    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. 2

    Is any of this happening?

    Be seen today

    Contact the care team promptly for a wound that changes from its usual pattern, worsening swallowing, reduced food or fluid intake, new eye symptoms, increasing weakness, or signs of anemia.

    Fever, spreading redness, pus, increasing warmth, or rapidly worsening pain should receive same-day medical advice because they may indicate infection.

    Seek urgent assessment for severe eye pain, sudden vision changes, inability to swallow liquids, repeated vomiting, signs of dehydration, or uncontrolled bleeding.

    And for anyone, someone who:

    • has a wound that is hot, spreading red, or leaking pus
  3. 3

    Does any of this apply?

    Book an appointment

    Routine follow-up should be based on the EB subtype and individual needs.

    Visits may review wounds, pain, itching, nutrition, growth, movement, dental health, emotional well-being, and supplies.

    People at increased skin-cancer risk need regular full skin examinations on a schedule set by their specialist.

Every sign above is quoted from the sofidex article on Bullosa hereditaria. If you are not sure, err upward — it is always reasonable to be checked.