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
These symptoms need assessment but are not always an emergency.
Emergency care is appropriate for severe breathing difficulty, chest pain, fainting, blue or gray lips, confusion, or signs of a serious transfusion reaction such as breathing trouble, swelling, or rapidly worsening illness during or soon after a transfusion.
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
Contact the treating team promptly for a clear increase in paleness, fatigue, shortness of breath, fast heartbeat, poor feeding, reduced activity, or unexpected bruising.
Seek urgent medical advice for a fever in someone who has had a stem cell transplant, is taking immune-suppressing medicine, or has been told that their immune system is impaired.
3
Does any of this apply?
Book an appointment
Regular follow-up is important even when anemia is stable.
The schedule depends on age, treatment, and the certainty of the diagnosis.
Routine visits may include:
A blood count and review of anemia symptoms
Monitoring of growth, development, and nutrition
Assessment of hand function and other congenital differences
Checks for transfusion-related iron overload
Review of corticosteroid or transplant-related effects
Heart, bone, hormone, and cancer surveillance when appropriate
Updates to genetic counseling as testing improves
Every sign above is quoted from the sofidex article on Aase syndrome. If you are not sure, err upward — it is always reasonable to be checked.