It’s 2024. A New Year.This year around the world about 4000 people will newly onset with the primary form of aHUS.
About 1200 of them will be living in China or India, about 400 will be in UK and Europe, and around 150+ in the USA.
2250 will be from the rest of the world.
aHUS is very rare.
aHUS is a TMA , a thrombotic microangiopathy. There are many more that suffer from TMAs. No one knows how many but 100 times more would be an educated guess.
So 400, 000 people manifesting with TMAs.
Many of those TMAs may not be identified, including those with aHUS TMAs. And the TMAs of many people with aHUS will not be correctly identified as aHUS.
Although having aHUS is unfortunate, anyone newly identified as has having aHUS has been fortunate to be so. aHUS patients tend to mention their luck in getting a diagnosis when they find out what could have been.
Having aHUS in 2024 is not necessarily the death sentence it was in the 1990s.
Indeed 2024 can be viewed as the beginning of a new era for aHUS.
2024 will see:
-new treatment options in development
-more access to treatments in more countries
– more understanding about stopping treatment safely
– new clinical practice guidelines
-increased focus and interventions on the long term psychosocial impact
-new communication platforms for patients
-more research by patients for patients
– even a new name for the disease.
Many of the things aHUS patients know are important, and new patients will come to know these too, are being answered more and more.
Global Action is in the middle of a series of updates on what has been called the Global aHUS Patients Research Agenda. These updates explain where these important topics are up to.
To catch up on these topics go to the first of the series at this LINK.
For a 360 degree view of aHUS resolve to visit this site more in 2024. If you have not already done so subscribe to our periodic news magazine to keep up to date.
Article No. 628