Managing your atypical-hemolytic uremic syndrome (atypical-HUS)

Just because atypical-HUS is rare, that doesn’t mean you’re alone. There are medical professionals, groups, and organizations, like the aHUS Foundation. There are also plenty of other individuals like you who are living with, or caring for, a loved one with atypical-HUS.

Managing atypical-HUS starts with building a relationship with your doctor, nurses, and medical staff. They can answer questions you have about atypical-HUS and talk to you about your options for managing atypical-HUS.

It’s important to set up a management plan and frequent follow-ups to monitor your condition. Your healthcare team can also point you to resources you and your family can use along your journey.

How is atypical-HUS managed?

Your doctor may use plasma exchange or plasma infusion to manage atypical-HUS; however, be sure to talk to your healthcare team about a potentially overactive complement system that may be the root cause.2,3,5

Atypical-HUS patients may need dialysis or kidney transplant surgery, which have significant risks, as a result of the disease, especially if the disease goes unmanaged for a long period of time.2,4,10

Talk with your doctor about a management plan that works for you. Your doctor will work with you to schedule frequent follow-ups and monitoring of your rare disease.

Talking to your doctor

Sometimes talking to your doctor can be overwhelming. Download this Doctor Discussion Guide to help you track all the questions you want to ask, plus your symptoms, so you can make the most of every one of your visits.

When you sit down with your doctor, you may want to discuss the following:

  • What are important signs and symptoms that I should monitor?
  • If I’m not feeling well, who should I call?
  • What's the most important thing I should know about atypical-HUS?
  • What tests will be done just once or at each doctor’s visit?
  • What will the results tell me?
  • How will we manage my atypical-HUS?
  • What are my management options?

Take a proactive approach to managing your atypical-HUS with these valuable resources

Doctor Discussion Guide 

Atypical HUS patient education brochure 

Connect with the community

Although no one’s journey is exactly the same, there’s a lot you can learn by talking to other patients and their families.

Community and Support