Planning for the Future When You Have aHUS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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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 and national patient organizations that can help with support and planning for the future. Your care team can put you in touch with these groups.

Here are some tips to help with planning for the future (sometimes called advanced care planning).

Legal and financial considerations

It’s important that you talk to both a lawyer and a financial planner when planning for the future. While you should let your partner and other family members clearly know your wishes, it’s vital that you record these wishes legally. You may think that your family would go along with your wishes without disagreement, but grieving families are not always rational. Having a legal document like a will can avoid arguments and hurt feelings.

End of life care

Your doctor will discuss your options for treatment. It’s a good idea to designate a healthcare proxy, or agent, just in case you are not able to make your own medical decisions. Many people choose a family member or trusted friend for this role.

You may want to discuss with your care team what palliative care and hospice options will be available to you, and what options you would prefer. You should discuss your wishes with your doctor and your healthcare proxy.

Organ donation

If you wish to donate your organs or tissues to science after your death, you must make an anatomical bequest. In many cases, your estate cannot make these decisions for you. Your doctor may be able to put you in contact with groups that will help you with this process. An anatomical bequest is generally an official document filed with your hospital care team, though your medical proxy may also need a copy for their files.

Funeral plans

Think about how you would like to be remembered. Sometimes it helps to discuss your plans with family or friends and get their thoughts. You may want to make as many arrangements as possible in advance. Your lawyer may be able to help with executing some of your wishes, as well as recording them in your will.


Last updated: June 29, 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.