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Warning-sign checks

Duchenne muscular dystrophy: 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 medical help for:

    • Severe or rapidly worsening difficulty breathing
    • Blue, grey, or unusually pale lips or skin
    • Collapse, fainting, severe chest pain, or a sustained racing heartbeat
    • Choking with ongoing breathing difficulty
    • Sudden weakness with dark urine after anaesthesia or a major illness
    • Severe illness or repeated vomiting in someone taking long-term steroids, especially if an emergency steroid plan cannot be followed

    Bring the person's DMD and steroid emergency information to urgent appointments whenever possible.

    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

    Arrange routine or prompt follow-up for noticeable changes in walking, falls, pain, sleep, swallowing, weight, mood, or daily activities.

    Report new palpitations, increasing tiredness, morning headaches, a weaker cough, or more frequent chest infections.

    Contact the specialist team promptly after a fall or injury, especially if there is pain, swelling, or refusal to use a limb.

    Fractures can occur after relatively minor injuries.

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