sofidexFor patientsAre you a clinician? Clinical site

Warning-sign checks

Guenther porphyria: 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

    Seek emergency help for difficulty breathing at rest, chest pain, fainting, confusion or severe weakness.

    Emergency assessment is also appropriate for rapidly spreading skin redness, severe swelling, fever with marked illness, or difficulty waking.

    These may indicate a serious 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. 2

    Is any of this happening?

    Be seen today

    Contact your specialist team promptly for:

    • Increasing weakness, dizziness or a fast heartbeat
    • Fever, pus or worsening redness around a wound
    • New eye pain, redness or blurred vision
    • More frequent blistering despite usual light protection
    • Increasing abdominal fullness that may suggest an enlarged spleen

    These can be signs of serious anemia or another urgent problem.

    A large burn or extensive blistering may need urgent wound and fluid care.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange routine medical advice if you notice new blistering, worsening tiredness, increasing shortness of breath, changes in vision or wounds that are not healing.

    New red or dark urine also needs assessment if CEP has not already been confirmed, because urine color has several possible causes.

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