Diagnosing aHUS patients without kidney involvement has always seemed paradoxical.
TMA can affect capillaries in all organs but the “u” in aHUS is an important distinguishing feature.
That having been said aHUS patients can have a problem with one or more other organs too.
But it is only a minority of aHUS have no kidney problem.
What do these non kidney patients look like? Are their key characteristics different?
Which is their main organ of concern?
Who diagnoses them?
Who treats them?
Residual kidney problems can impact on aHUS whether they have been on dialysis or not. What are non kidney patients residual problems from their damaged organs?
What is the prognosis for non kidney aHUS patients? Are they more likely to go into an untreated remission or not ?
In fact is it just a parallel disease ?
Has there been any research into non kidney aHUS patient it may reveal something which benefits kidney aHUS too?
Article No. 590