It can be exhausting and stressful to be the caregiver for someone who has a chronic disorder such as atypical hemolytic uremic syndrome (aHUS). Because stress can trigger anxiety and depression, among other issues, it is imperative that you practice self-care in order to stay healthy.
When you’re living with a very rare disorder such as atypical hemolytic uremic syndrome (aHUS), with its host of potential symptoms, you may find it difficult to stay motivated. Here are some ideas that may help spur you on. Stick to times you’re most productive aHUS can cause…
If you have atypical hemolytic uremic syndrome (aHUS), you need to have regular blood tests to check the health of your kidneys and your platelet and red blood cell counts. It is important to track your results over time. Here’s some information about how to do that,…
Raising awareness of rare chronic disorders such as atypical hemolytic uremic syndrome, or aHUS, could mean more patients benefiting from earlier diagnosis and treatment. Here are some points about aHUS, and the ongoing efforts to make it more widely known. What is aHUS? One of about…
For people with atypical hemolytic uremic syndrome (aHUS), self-care is important to help cope with the multiple health problems resulting from the disease, including hemolytic anemia, thrombocytopenia (low platelet count), kidney failure, nausea, shortness of breath, fatigue, heart disease, and seizures. If you…
Life can be challenging with a rare and chronic disease like atypical hemolytic uremic syndrome (aHUS). Family and friends may not be able to understand what you regularly go through. That can be exhausting and frustrating. A metaphor called the spoon theory may help. What is the spoon…
Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz) are medications developed by Alexion to treat atypical hemolytic uremic syndrome (aHUS). How are these medications similar? Both Soliris and Ultomiris contain humanized antibodies, or antibodies that work with the human immune system. These medications block the complement system, a…
It can be challenging to live with a rare and chronic disease like atypical hemolytic uremic syndrome (aHUS). Using a tool called mindfulness can help you cope with the stress that often accompanies these challenges. What is mindfulness? Mindfulness is the practice of being constantly aware of…
Atypical hemolytic uremic syndrome (aHUS) is a multi-organ disease that primarily affects kidney function. Therefore, travel takes extra planning and preparation. Here are some tips for a safe trip if you have aHUS. What are things to consider before traveling? Plan ahead to avoid rushing or leaving unprepared. In…
Being diagnosed with a rare disease like atypical hemolytic uremic syndrome (aHUS) can be frightening, especially as this disease may affect your lifespan. Your care team will talk to you about the future. Many patients can also benefit from talking with a counselor. There are also local…
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