We all want aHUS patients to survive to old age, but what about those whose aHUS onset is later in life.
Their chances used to be that did not survive very long. The severity of the disease onset in frailer people and even dialysis used to be denied them.
They had had a long life and although they were susceptible to get aHUS at anytime no triggering hit set it off . Even pregnancy in the case of women whose onset hits after they reach 45 years of age.
Global Action found that by far the majority of late onset patients over 55 are female*.
This could be because older male patients are less likely to join in social media and don’t join in our surveys. Most male patients in surveys are boys.
Or could it be that another change of life event for women, like puberty and pregnancy, which impacts on younger females, is at play.
But is it something that needs exploration to understand the nature of our disease better, even for younger patient? Particularly its triggers.
If no one else is prepared to go there maybe older onset patients could themselves set an agenda for it. What do older patients think?
They could help younger patients too. They themselves will be old one day, all being well.
Article No. 587
*Extract from aHUS Diagnosis Process Report 1
“Overall, however , the age and gender characteristics of participants do not differ significantly from expected results derived from the sum of other aHUS Global Registry Patient Poll reports (25, 26, 27,28). There are more aHUS adults than children; and there are more females with aHUS than males. The gender/age differences are also consistent because there are more boys than girls in the infant age group, whereas in older children there is no gender difference. In adulthood aHUS women are much more prevalent than men. Among the respondents in this study there was a substantially higher gender difference in the 55 and older age group, there were 20 women and only 2 men. This may also explain the relatively higher female patients than males participation in the study because without the older patients, the young and middle-aged patients have a gender mix of 66F:33M which would fall within expected gender parameters.”