We asked an expert “ Have you heard about Long COVID? Given the similarities could there be a LONG aHUS?”
This was the reply we got.
“Yes, I’m aware of “Long COVID,” which refers to the persistence of symptoms and health issues for weeks or months after the acute phase of a COVID-19 infection has resolved. Given the similarities in terms of persistent or long-term health issues, it’s possible that individuals with atypical hemolytic uremic syndrome (aHUS) may experience what could be informally referred to as “Long aHUS.”
While aHUS is distinct from COVID-19, both conditions can have long-lasting effects on health, including complications that persist beyond the acute phase. Some aHUS patients may experience ongoing health challenges, such as kidney damage or other aHUS-related complications, even after the initial acute episodes have subsided.
It’s important to recognize that the experiences and health outcomes of individuals with aHUS can vary widely based on factors such as disease severity, treatment, and individual responses. Like Long COVID, “Long aHUS” would involve addressing and managing persistent or chronic symptoms and complications, and healthcare professionals play a crucial role in providing ongoing care and support.”
Well there you have it. What Global Action has for sometime now* deemed “Long aHUS” after listening to what some aHUS patients told us, could actually be a valid phenomenon of our disease.
Whether healthcare professionals are prepared to recognise it too is really the issue now? A consensus on its definition would be of help.
COVID patients were common and were able to draw attention to LONG COVID in a media eager for the story , but as always it is different and difficult for those with a rare disease.
Unless aHUS patients voice it loudly , there will unlikely be any recognition nor acceptance of what is happening to them.
Article No. 613
aHUS alliance Global Action has previously brought up the concept of “Long aHUS ” in its articles during the COVID pandemic. An enormous amount of publicity has been given to…
Any studies or antidotal cases of how AHUS patient’s, on maintenance complement blocking infusions, fared after getting Covid? Any difference than the population at large?
We know of no such studies nor anecdotes in the public domain but that is very good point.