sofidexFor patientsAre you a clinician? Clinical site
Ask Sofi
Listen
Patient SupportEmergencies & Reporting
Log inSign up

Warning-sign checks

Ehlers-danlos syndrome: 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:

    • Sudden, severe, unexplained chest, abdominal, back, or head pain
    • Collapse, fainting with severe pain, or signs of shock
    • Sudden weakness, facial drooping, speech difficulty, or loss of vision
    • Severe breathlessness or coughing up blood
    • A painful injured limb that becomes cold, pale, blue, numb, or weak

    These symptoms are especially important if you have vascular EDS or are being assessed for it.

    They can also be emergencies in people without EDS.

    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

    Seek prompt medical advice for a new dislocation, a wound that will not close, unexplained heavy bleeding, or a rapid change in symptoms.

    A dislocated joint should not be repeatedly forced back into place without appropriate training and advice.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange a routine appointment if you have repeated dislocations, frequent sprains, persistent joint pain, unusual skin fragility, or easy bruising without a clear explanation.

    Assessment is also reasonable if these features occur with a family history of EDS or unexplained artery or organ rupture.

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