Health care and better estimating lead us to believe there are approaching 3000 aHUS patients in the USA who have survived their encounter with their disease, if not already 3000.
Many more than the 700 patients previously estimated. But still very rare when compared with 200,000 level below which a disease can be considered rare.
So who ,and where, are they?
There are 50 US states and patients will be spread throughout.
Some will have had complement inhibitor treatment, some may have not, or too late to save their kidneys.
In 2023 another 200 or so new aHUS patients will join them. The majority of them will have had no prior knowledge of the disease.
They will become aware that there is little awareness and after what they have just gone through, are likely to think “ why is that?”.
Although many USA aHUS patients have connected with the different outreaches from patient advocacy groups like the aHUS alliance Global Action, most have not. It is the nature of patients and their families what ever illness they have.
If treatment is accessed and clinical needs are met, then getting on with life is fine.
The growing number of USA patients is a testament to what success can be for one the rarest diseases in the world.
We will never know exactly when USA prevalence level 3000 happened or yet may happens, but once that moment passes it is then on to the 4000th aHUS patient, sometime before 2030.
aHUS is not a good thing to get but there have been worse times than the 2020s to have had it as 3000 would testify.
Article No. 591