As per the Kidney Research UK Information page, "Atypical haemolytic uraemic syndrome (aHUS) is a very rare kidney condition. It is one type of HUS which arises when blood vessels within the kidney’s tiny filters become blocked by blood clots.
"The disease is caused by abnormalities in the complement system. Complement is a part of our immune system that is important in fighting infection. It does this by coating both foreign cells (such as bacteria and viruses) and our own cells (including those of the kidney) with proteins called C3 and C4.
The proteins help to destroy bacteria and viruses by damaging their cell walls. Our cells are normally protected from these complement proteins by other ‘protector proteins’ that help control complement. In aHUS, there are faults in the complement system that means the ‘protector proteins’ don’t work properly. As a result, clots form within the blood vessels within the filters of the kidney causing anaemia, a reduction in platelets (a type of blood cell) and kidney failure."
Put simply, this disease is caused by our own bodies, attempting to fight off infection in the kidneys and damaging our own cells in the process. What should be a normal bodily process therefore becomes incredibly dangerous.
Prior to Mum's diagnosis, we had no idea what HUS or aHUS was. Shortly after she had passed, we were tested for the genetic fault, not really understanding what could happen if the result was the worst outcome. It took a good few years before we were able to read into it properly and understand what had happened at the time. Luckily, myself and my two sisters do not carry this fault.
It brings us great relief to see that strides are being made with regards to treatment for this disease, but due to the rarity, it may still go unchecked or misdiagnosed. Therefore, we think it's so, so important to get any irregularities examined by your GP as soon as possible and you mustn't downplay your issues.
If you notice a family member of friend struggling with tiredness, odd symptoms or anything out of the ordinary, do push for them to go and get seen. It will most likely be nothing major, but better to get these things checked and catch them early whilst there are plenty of options for treatment.