What’s It Really Like Living With aHUS?

It’s essential to follow your healthcare provider’s guidance and treatment plan for managing atypical hemolytic uremic syndrome (aHUS). Here, we offer some additional suggestions.

A man holding a child and looking out a window

What You Can Do

Everyone’s experience with aHUS is unique, so it’s crucial to tailor your daily routine and management plan to your specific needs in consultation with your healthcare team. Here are some general steps you can consider:

Consultation with Specialists

Continue to work closely with your healthcare team, including nephrologists and hematologists, who specialize in managing aHUS.

Medication Adherence

Take any prescribed medications as directed by your healthcare provider. These medications may include immunosuppressants, plasma exchange, or complement inhibitors.

Regular Monitoring

Your healthcare provider will likely schedule regular check-ups to monitor your kidney function, blood pressure, and overall health. Make sure to attend these appointments and follow-up tests.

Diet and Hydration

Follow any dietary recommendations provided by your healthcare provider. This may include managing your salt and fluid intake, especially if you have kidney issues.


Engage in regular, moderate physical activity as recommended by your healthcare provider. Exercise can help improve overall health and well-being.

Blood Pressure Management

If you have high blood pressure, work with your healthcare team to control it. High blood pressure can worsen kidney problems.

Smoking and Alcohol

If you smoke or consume alcohol, consider quitting or moderating these habits, as they can impact your health and kidney function.

Mental Health

Don’t overlook your mental health. Living with a chronic condition can be challenging. Consider seeking support from a therapist or counselor if you’re experiencing emotional stress.


Educate yourself about aHUS, its symptoms, and potential complications, and stay informed about developments. Knowledge can empower you to make informed decisions about your health.

Support Network

Lean on your friends and family for emotional support. They can provide encouragement and help you navigate your healthcare journey.

Helpful Forms

aHUS LabTracker

Track lab trends to monitor patient health. A handy trifold for patients or caregivers to keep with them, the LabTracker provides an organized format to record your lab results and other important health data. Available at aHUS meetings in printed format, or download a printer-friendly PDF below.

Download LabTracker

Emergency Room Card

Send an e-mail to our Alyssa at alyssa@ahus.org to get an ER card mailed to you! This is great to have when you need a quick explanation of aHUS in an emergency.