Australia – Drug for rare blood disorder not funded by government
February 18, 2014; Posted by: WeBleed staff
Those suffering from atypical haemolytic uraemic syndrome in Australia have trouble getting their needed medication.
The blood disorder atypical haemolytic uraemic syndrome (aHUS) affects two in every one million Queenslanders and causes damage to a person’s vital organs, killing over two-thirds of patients within the first year. Patients can undergo kidney dialysis, plasma exchange and sometimes organ transplantation to stay alive. One proven treatment, Soliris, is not offered in Australia.
Enter Deborah Shaw who relies on nine-hour dialysis sessions, every other night, to keep her alive. The disease has not only affected her health but also her quality of life with her husband and two kids.
“What was normal is now a luxury,” she told the Fraser Coast Chronicle. “Simple things like taking your kids for a swim, couldn’t do it…We really need this funded and without it we have no future. My children will have no mum.”
To learn more about aHUS, click here.
Photo Credit – Mike Richards
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