A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

What is aHUS?

What is aHUS?

Professor Tim Goodship

According to Professor Tim Goodship “Atypical Haemolytic Uraemic Syndrome (aHUS) is a rare disease. Research shows that in most cases that it is genetic in origin, with abnormalities in the innate immune system called complement. These abnormalities lead to excessive activation of the complement system which can in turn lead to the development of blood clots in the filters of the kidney. This is why patients with this condition develop kidney failure.

In its typical form Haemolytic Uraemic Syndrome (HUS) is associated with gastrointestinal E. coli O157 infection and this is why in E. coli outbreaks victims can experience kidney failure .The good news is that if the HUS episode is controlled full recovery is possible with no recurrence.

In its atypical form (aHUS) other factors such as pregnancy or a viral infection may trigger an episode. Most patients with aHUS do not recover kidney function and need long term dialysis. Kidney transplants in these individuals unfortunately often fail because disease recurs in the new kidney”

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Dr. Sally Johnson

At the first aHUS Patients Conference held in Newcastle upon Tyne on 11 June 2011 Dr. Sally Johnson who is a Consultant Pediatric Nephrologist at the Great North Children’s Hospital in Newcastle gave a presentation which also answers the question. A video of the 30 minute presentation, which also includes comments by the Chairperson of aHUSUK, Margaret Squires, can be viewed at :http://ahus.org.uk/videos/sally/

 

 

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At the NKF roadshow this autumn, Dr David Kavanagh, a Consultant Nephrologist at  the Freeman Hospital, Newcastle upon Tyne, gave  a talk about Genetics and atypical Haemolytic Uraemic Syndrome . Follow the  link here to listen to  the talk.

 

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 A comprehensive lay explanation of what aHUS is, courtesy of Bill Biermann in the USA, can be read on the Foundation for Children with Atypical HUS website at http://atypicalhus.ning.com/page/what-is-ahus

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An abstract about aHUS from the website of  Orphanet which is  a European Organisation   with the most comprehensive and reliable  in formation  on rare diseases can be  seen here

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As for some reason wikipedia has a link to ahusuk.org so we reciprocate, by clicking here 

For further more clinically orientated information on aHUS and its diagnosis and treatments go to the Medical Matters section of our website.