Our expert says:
It is the absolute duty of the doctors who made the diagnosis to discuss this fully with the woman herself, and with her family, so you can all understand how this illness can affect her, what she may or may not need in the way of help, and what can be done to help her. Maybe they're wanting the results of tests to be sure of what is happening before discussing it, but don't let them evade that responsibility - see them and ask.
As I recall it was far more common in the Northern hemisphere than in the southern, so people and health care in SA tends to have less experience of dealing with this condition. More than most illnesses, it is characterised by ( neurological ) symptoms which come and go - which can become really severe and troubling for a time, and then improve. Usually it does not involve significant pain, or the need for pain meds, so its important to hear exactly from her treating docs what is happening. Similarly, even very severe pain, of whatever cause, can usually be helped by proper expertise in pain control, and usually without major sedation. The local hospice which has paticular expertise in this field, could perhaps advise.
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