Brain
Lung
Heart
Liver
Kidney
Intestines
Symptoms can be vague, or mimic other illnesses, and they can vary widely between people. In fact, you may not always experience the symptoms or see the signs.
Track your symptomsIt’s important to monitor your symptoms and share this information with your doctor
aHUS is related to your immune system. The proteins in your immune system responsible for recognizing, attacking and destroying foreign substances that could harm you, such as certain viruses and bacteria, are called “complement”.
In aHUS, there is a genetic defect in the complement system that puts it in a continuous state of attack, even when there’s no foreign substance. The healthy cells that line the blood vessels in your body are attacked and become damaged and swollen. To repair the damage, your body recruits platelets and other blood cells to the site of attack.
Blood cells “stick together” and form clots that can block normal blood flow to some very important organs, potentially damaging them and impairing normal function.
If left untreated, this damage can be irreversible and can lead to a permanent loss of organ function
How rare is aHUS? Statistics vary, but estimates suggest there are between 2 and 5.5 aHUS patients per million people. That means, in a population similar in size to the city of Ottawa, there could be as few as two people with aHUS. It’s a very rare disease.
Now what does it mean to call it a genetic disease? Well, genes are instructions to make proteins. In certain situations, genes undergo permanent changes that cause them to have the wrong instructions; this is called a genetic mutation. Genetic diseases like aHUS are caused by genetic mutations.
In order to prevent the complications associated with aHUS, it’s important that you and your doctor talk about your treatment options and determine what treatment is right for you.
Atypical Hemolytic Uremic Syndrome (aHUS) can impact mental health, daily routines, relationships, lifestyle, performance in work and school, and more – for the person living with aHUS and their family and caregivers.
It’s important for people living with aHUS to work closely with their healthcare team so they can take control of aHUS and prevent the complications associated with the disease. Your doctor will monitor your progress to help determine when to start treatment and which treatment option is right for you.
Learning about aHUS, and how it affects your body, is an important step towards managing your disease.
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Learn more about health policy and advocating for a healthcare system that works for those with rare disorders..
