MANCHESTER, England, September 21, 2015 /PRNewswire/ --
aHUS patients and families in the UK are supporting International aHUS Awareness Day 2015
(Photo: http://photos.prnewswire.com/prnh/20150920/268583 )
Organised by the aHUS alliance, the first ever International aHUS Awareness Day will be held on 24 September 2015.
atypical Haemolytic Uraemic Syndrome, or aHUS, is an extremely rare disease affecting fewer than 200 people in the UK.
HUS is perhaps better known in its typical form, as a cause of death or kidney failure following e coli poisoning; but in the atypical form there are many other triggers, such as flu or pregnancy. For those who survive the car crash like onset experience of aHUS, but end up with chronic kidney failure, even a kidney transplant can ignite another episode to destroy the new kidney graft. Unlike others with kidney failure, aHUS patients were denied a transplant.
Another difficulty faced by aHUS patients is that they need the most expensive drug in the world to control their disease. Eculizumab, produced by Alexion Pharmaceuticals, is a monoclonal antibody which can control an aHUS patients' own innate immune response; effectively stopping the "friendly fire" which causes the damage to the patient's body. Eculizumab was the drug at the centre of a recent furore in the media about a teenager who had Dense Deposit Disease; but whereas the clinical effectiveness of using it for DDD is uncertain, there is no doubt about its efficacy for the treatment of aHUS.
Earlier this year the National Institute of Clinical and Public Health Excellence, NICE, recommended Eculizumab as the treatment for aHUS in England .NICE accepted that Eculizumab had an exceptionally high clinical effectiveness. A child on setting with aHUS receiving Eculizumab today, could expect a normal lifespan with a regular quality of life. Others receiving the alternative burdensome treatments of dialysis and plasma exchange with their severe co-morbidities leading to premature death.
NICE's recommendation also puts in place ways by which the treatment can be delivered in a safe, sustainable and affordable way; with researchers, clinicians and patients working together to make this happen. Compared with what happens in other countries NHS England can provide a world class service to aHUS patients (as well as NHS Wales and Northern Ireland and by 2016 Scotland too if the Scottish Medicines Consortium agree).
On 20th of September a group of aHUS patients completed a fundraising walk in Newcastle upon Tyne and in doing so also celebrated the work of a Swiss Professor, Conrad von Gasser on the day, exactly 60 years ago, when the disease he called "hamolytisch uramishe syndroms" appeared in a medical journal for the first time. In 1955 having HUS was a death sentence, but, due to genetic research and developments, a miracle drug has been discovered for those with aHUS today.
A group of aHUS patients, families and carers about to walk the Tyne Bridges to raise research funds and awareness.
To get the benefit of this treatment, however, patients need a quick and accurate diagnosis. For that to happen greater awareness of aHUS is needed. So on International aHUS Awareness Day 2015 Emma Woodward, Chair of aHUSUK says "aHUS needs to be thought about because if aHUS is not being thought about it is not going to be diagnosed."
aHUSUK- a patients and families support group
http://www.ahusuk.org for more information http://www.ahusalliance.org
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