Nearly two and half years ago aHUSUK featured a blog item about the average aHUS patient and this is an excerpt of what was written then :
“From the information in the database* it would seem the average aHUS patient is about 25 years old, having been diagnosed with aHUS about 5 years previously , and can equally be either male or female but is most likely to be caucasian. The patient’s family is very unlikely to have a history of aHUS, and the patient has just less than a 50:50 chance of having of one of the known genetic predisposition factors. The patient is likely to have been on eculizumab for just over a year with a typical dose of 900mg , but is less than likely to have had a transplant but is as likely as not to have had an experience of dialysis and plasma exchange.”
The latest report from the *aHUS Registry database now says that the average is now 27 years old. A child with aHUS is likely to be 8 years and an adult 40 years old.
The average patient is still equally likely to be male or female; but the child patient is more likely to be a boy whilst the adult patient is more likely female.
The average patient is 90% likely to be white caucasion and will have lived with aHUS from onset an onset at 22 years old ( average child at 4 and adult at 34 years old) for 5 years ( 4 for avarage child and 6 for average adult patient.
A family history of aHUS remains unlikely as 4 in 5 patients have no experience of it.
*A fuller report on the characteristics of those in the aHUS Registry can be read by clicking here