There is more to aHUS than kidney disease

An onset of aHUS although predominantly associated with kidney failure, as the “U” for Uraemic relates, the Haemolytic activity also causes problems in other major organs.
In the run in to a catastrophic  episode of aHUS patients frequently report other symptoms such as stomach  upsets and some breathing problems.
In a poster abstract presented at the American Society of Haemotologists Meeting in San Diego this week investigators reported what they found in a study of over 500 patients enrolled in the Global aHUS Registry. ( click here for more information about the aHUS Registry)
The study separated those patients enrolled in more recent years from those whose onset many years ago before the Registry was established and may have recollection difficulties.
As would be expected most, 75%, of patients had renal problems but 38% reported gastrointestinal ,   32% cardiovascular ,25% Central Nervous System and 19%  pulmonary problems too. Children had more renal and gastrointestinal problems than adults ,who reported more pulmonary difficulties.
The full abstract can be read by clicking here.
In the 2016 Global aHUS Survey respondents also reported similar issues in answer to Q39.
Although about one third reported no other non renal problems just less than a third reported they had experienced stomach/GI problems , whereas around 15% reported breathing problems. A third of patients reported Central Nervous System issues.
The Survey  results are not  that  far apart from the Registry Study.
Except in the Global Survey about 20% of respondents stated they had some skin problems and a similar number reported vision issues.
But for most, headaches were frequently experienced symptom.
See the detailed chart of the Q39 Global Survey responses by clicking here.
The Global aHUS Registry and the Global aHUS Survey come to the same conclusion that aHUS does not just affect the kidney and other organs are very much involved.

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