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 have aHUS, here are some suggestions that can help.
Mind your diet
aHUS can be triggered by various environmental factors — including diet – in people who are genetically predisposed. Certain foods can also be linked to disease flare-ups.
Diet recommendations to help prevent or minimize such flare-ups include avoiding contaminated food, lowering your salt intake, identifying allergy-causing foods and their substitutes, and consulting a dietitian.
aHUS and its symptoms can cause considerable stress, especially if not attended to diligently. Self-care tips for managing stress include understanding your symptoms, cultivating a good diet and overall healthy lifestyle, trying to stay optimistic, and networking with other patients and caregivers.
A tool called mindfulness can help you cope with the stress that often accompanies the challenges of living with aHUS. Mindfulness is the practice of being constantly aware of your thoughts, feelings, sensations, and environment. Rather than rehashing the past or imagining the future, mindfulness means embracing what is sensed at the moment. That can help you deal with life’s ills more calmly and sensibly.
Recognize signs of depression
aHUS affects the kidneys and many patients end up needing dialysis. A 2016 global poll of aHUS patients indicated that 27% of those who had undergone dialysis experienced anxiety and depression, so some people with aHUS may benefit from psychological care.
Signs of depression to watch for include low physical activity, increased irritability and reckless behavior, low work productivity, loss of appetite and sleep, increased dependence on smoking and alcohol, reduced therapy compliance, and suicidal thoughts.
Join a support group
aHUS is a very rare disorder that affects about 20,000 people in the world. The rarity of the disease can make access to information difficult and time-consuming. This is where advocacy and support groups can help. Tips for finding such groups, and what to expect from them include registering for aHUS support services, checking out resources provided by pharmaceutical companies, enrolling in the aHUS Registry, and joining patient associations on social media.
Take steps to cope
It’s important for you and your caregivers to proactively monitor symptoms and take precautions and other measures to help cope with aHUS. That includes keeping track of treatments and blood test results, staying clear of environmental triggers, having an emergency room letter handy, and networking with other patients.
Use the spoon theory
A metaphor called the spoon theory can help you describe to family and friends what life is like with a chronic disorder. According to the theory, you start each day with 12 spoons, and have to give up one spoon for each task you perform: brushing your teeth, dressing, visiting the doctor, making dinner, etc. When you’ve gone through all your spoons, that’s it. Your day is done. By contrast, healthy people usually have all the energy necessary — a seemingly infinite spoon supply — to do whatever they need to do.
Take a trip
If you’re up to it, getting away may do wonders for your overall health. However, travel does take extra planning and preparation. That includes making sure you have enough medicine, undergoing a blood test to check your kidney health, securing a wheelchair or other special accommodation, setting up dialysis treatment, and gathering information the dialysis center will need.
Plan for the future
Because aHUS may affect your lifespan, planning for the future can give you peace of mind. This can, in turn, positively affect your overall health. There are legal and financial considerations, and end-of-life care and organ donation decisions that you might need to make. Discuss your future with your care team, and perhaps a counselor.
Last updated: Aug. 24, 2020
aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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