Share/Bookmark

Latest News

28th February 2017
Research carried out by the Observer newspaper and the Bureau of investigation published earlier this month, reveals that in 323 abattoirs audited in England, W.... read article
Please Support HUSH

What's New


Medical information from our Friends at aHUS
5th October 2013
HUSH and its members have been very supportive of our efforts to persuade NHS England to provide the drug eculizumab to those aHUS patients who need it. Our petitions etc  have just recently  brought about an interim policy by NHS England to make eculizumab available, not just to those new onset to prevent acute kidney injury, but also to those on dialysis who need it to support a transplant.
 
There is an overlap between HUSH and aHUSUK ,and indeed the TTP patient organisation, because the immune response kicks off the same mechanism of our illnesses. This was brought home recently when a patient who had been diagnosed with HUS last year had another very serious episode when undergoing a transplant. As it was clearly now  an aHUS diagnosis , eculizumab ( now funded) was administered to save her life and the kidney graft.
 
 aHUSUK has heard of other HUS transplant  incidents like this  during the past twelve months but in some cases eculizumab was not given because it was not  funded.
 
Patients predisposed to aHUS can have an episode of HUS triggered by e coli. The presence of e coli does not rule out a diagnosis of aHUS;but patients need to be screened for known predisposing genetic mutations. Even if the tests are negative ,as it  is in 40% of cases, it does not rule out aHUS as there may be an unknown genetic mutation involved.
 
We have also come across aHUS patients who have been told they have HUS despite their history of several failed transplants and an on set during pregnancy. They are being denied further transplants despite the availability of eculizumab. I have even seen it written in a transplant centre's  " advice to patients" that some patients may not be suitable for transplant and giving HUS as the example.  
 
If  there are HUSH members who are either :
 
- facing a transplant with a diagnosis of typical HUS but who have concerns that they may be atypical HUS  or ;
- being denied a transplant because of their HUS;
 
then they ought to be asking their renal consultants about the possibility of them having the atypical form of HUS as their transplant may need to be supported by eculizumab. The cost of  a genetic test is much less than it was and substantially less than a failed transplant.
 
If any HUSH member would like to talk about it, they can contact us through our website.  www.ahusuk.org .
 
Finally we would like to thank HUSH and its members for their support to our cause , We still have to go through the NICE hoop in December, but we believe  that aHUS patients will soon be assured of a sustained and effective treatment .  

<< First < Previous Page 2 of 20 Next > Last >>

29th March 2015

Our colleagues at aHUS have arranged an international awareness day on 24th September 2015. This is to mark the 60th anniversary of the the term Haemolytic Uraemic Syndrome being mentioned .... read
5th October 2014

HUSH has supported an application for a feasibility study of the drug Eculizumab, for HUS sufferers. The drug is currently being successfully used for sufferers of a similar illness ca.... read
17th May 2014

HUSH has responded to the Food Standards Agence [FSA] Consultation on Raw/Unpasteurised Milk. Our response can be found in Consultations/Documents on our home page. We would like .... read
26th January 2014

HUSH has responded to the Department of Environment's Farming and Rural Affairs [Defra] call for evidence on Argriculture. This document can be found in the Consultation/Report Documents secti.... read
9th December 2013

The Herald newspaper in Scotland reported in an article on Friday 6th December 2013 edition that two children both under 5 years old, had become infected with the bacteruim E.coli 01.... read
20th October 2013

HUSH has submitted the following consultation responses,  to the FSA's review of Power of Entry 11-10-2013 & to the FSA's Consulation on THE FOOD SAFETY AND HYGIENE (ENGLAND) REGULATIONS 2.... read
5th October 2013

HUSH and its members have been very supportive of our efforts to persuade NHS England to provide the drug eculizumab to those aHUS patients who need it. Our petitions etc  have just recently.... read
21st September 2013

Research by Scientists have indicated that a vaccine given to cattle could reduce the number of cases by nearly 85%. Although one the vaccine manufactures claim to have a s.... read
1st September 2013

HUSH have been contacted by Stephen Bath, the assistant producer from a company called 'betty' who make 'The Food Inspectors' programme for BBC Television. They wish to talk to any HUS.... read
28th July 2013

The University of Alberta reports they have developed a new testing device that can detect E.coli while meat is still in the food processing premises.  The test is rapid and only takes.... read
<< First < Previous Page 2 of 20 Next > Last >>