How to Help a Family Member With aHUS

Atypical hemolytic uremic syndrome (aHUS) can lead to multiple health problems that affect the day-to-day life of a patient. Here are some ways in which family members can help support a person living with this extremely rare disease.

What is aHUS?

aHUS is characterized by blood clotting in the small blood vessels of the kidneys. This clotting can damage the kidneys, leading to multiple health problems, including hemolytic anemia, thrombocytopenia, kidney failure, shortness of breath, nausea, fatigue, heart disease, and seizures.

How can I help a family member with aHUS?

aHUS can affect family life in many ways. The disorder and its symptoms can cause significant stress, especially if not managed well.

Monitoring the disorder

Family members can help patients keep track of how they are coping, and help them share that information during doctor’s visits.

Accommodating dialysis sessions

If your family member has aHUS, they will likely need extra support if they end up requiring dialysis. Family life will have to readjust around these vital sessions. Your family member may need help to prepare for, or even get to, the session.

A 2016 global poll of aHUS patients showed that 27% of those who had undergone dialysis experienced anxiety and depression. Keep an eye out for these signs, and help your loved one get psychological help, if necessary.

aHUS can be triggered by various environmental factors, including diet for individuals who have a genetic predisposition. Certain foods can also be linked to disease flare-ups or aHUS attacks. Family members can help ensure patients adhere to dietary recommendations to help prevent or minimize such flare-ups. Recommendations include steering clear of contaminated food, reducing salt intake, and identifying allergy-causing foods and their substitutes.

Plugging into support

The rarity of aHUS can make access to information difficult and time-consuming. This is where advocacy and support groups can help.

You can register for aHUS support services, enroll your loved one in the aHUS Registry, and link up with patient associations on social media. You may also consider the resources provided by pharmaceutical companies.

Taking a trip together

If your loved one is up for it, taking a trip can do wonders for them, and perhaps you as well. However, travelling with aHUS does take extra planning and preparation. That includes making certain your relative has the medicine they’ll need throughout the trip, undergoes a blood test to check their kidney health, secures a wheelchair or any other special equipment they may need, and gathers the information needed by the dialysis center at the destination.

You might also want to check that your loved one has packed any insurance documents and a treatment plan, which includes a description of the disease and common symptoms.

Because aHUS is a rare disorder, you may have to help explain it to healthcare professionals should a medical situation arise while you and your loved one are away from home.

Last updated: Oct. 6, 2020

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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.