You have just been told that you or someone you love has Atypical HUS (aHUS). So “what does that mean” is naturally your next question. We’re here to help answer every aspect of that question and get you the knowledge you need.
Atypical HUS (Hemolytic Uremic Syndrome) is a genetic disease in origin and has historically fallen under the category of “kidney disease” as the kidney was the main organ system involved. Recent advances in understanding the disease now demonstrate it is a “complement mediated disease” and can affect more than one organ in the complement system of your body. The kidney is an innocent bystander that is impacted the most, or at least is the most obvious organ impacted, but there may be others as well. Atypical HUS is a rare disease that has a wide range of severity: some patients may experience one episode or “attack”, while others have regular episodes that can become quite severe.
The Changing Landscape
Not too long ago, you would have very limited choices for information and help. Finding answers to your questions would be extremely difficult to answer. It was also not very encouraging when doctors would admit that he or she has only seen a small number of cases of this in their entire career. However, thanks to a dedicated group of parents and organizations worldwide, that has now changed for the better.