House of Commons – May 14, 2013 – 1

Ordered, That the debate be resumed tomorrow. I rise to present a petition on behalf of the sufferers of atypical haemolytic uraemic syndrome, known as aHUS, a rare disease that causes irreversible kidney failure. Until recently there was no effective treatment for this condition, which has 139 known patients in England, of whom 20 live in Devon. I am presenting the petition to press for aHUS sufferers’ access to Eculizumab, a new drug that has been proven to cause a dramatic improvement in kidney function and, indeed, in the quality of life of patients diagnosed with aHUS. The petition has received almost 30,000 signatures nationally and is presented on behalf of the national group, aHUS Action. It was brought to me by one of my constituents, Elena Lilley, who suffers from aHUS. She received Eculizumab as part of a clinical trial three years ago and it has transformed her life, avoiding the need for her to be put back on dialysis and enabling her to resume a full-time job.