The first thing about aHUS numbers is that there is no exact record of global aHUS patients anywhere . But research on the universal characteristics of all aHUS patients tend to fall into the same ballpark numbers.
Firstly adult aHUS patients outnumber child patients by about 2 to 1. Similarly there are twice as female patients are as male patients. Even more so after puberty.
The average age of a patient today is late 20s and the average of onset is in the early 20s . The average aHUS patients is getting older.
The majority of aHUS patients will be the first in their family to get aHUS , about 4 out every 5 aHUS patients
So up to 20% of patients will know of someone else in their family who has had aHUS.
Around two thirds of aHUS patients will have a pathological genetic mutation making them susceptible to aHUS if there is a trigger.For the rest, the science has yet to identify the genetic factor that leads to their uncontrolled complement
The first known aHUS patients known in a family aHUS could pass it on to the next generation of course but penetrance of the disease is incomplete and it could skip a three, four five generations before appears again.
Sporadic and familial patients are twice as likely to report a family history of kidney disease.
In the USA between 150 to 200 new aHUS patients will onset each year and by now there are approaching 3000 aHUS patients.
As patients in many parts of the world cannot access the best of treatments relative survival numbers are less and maybe only 22000 patients are living to day. That figure could have exceeded 90,000 if all patients could access treatment.
Of the 4000 or so aHUS patient onsetting each year the majority may not get a diagnosis or treatment in time to save them.
This is why aHUS awareness is so important among the worlds’ clinicians as well as ourselves.
How many aHUS patients and families will raise awareness of aHUS on aHUS Awareness Day ,the 24th September.
Well that would be some number.
Article No. 599