Planning for Your Future After a FAP Diagnosis

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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FAP and planning

Finding out that you have a rare disease, like familial amyloid polyneuropathy (FAP), that may affect your lifespan can be challenging and frightening.

It’s important to talk to your care team about the future. Some people can also benefit from talking to a counselor after a diagnosis. Local and national patient organizations can also help with planning and support.

Here are tips to help you get started in planning for the future (sometimes called advanced care planning).

Legal and financial considerations

Talk to a lawyer and a financial planner. It’s important to record your wishes in writing to avoid potential differences and disputes among family members. Even if you think your family would never go against your wishes, or argue about what you would have wanted, grieving families are not always rational. Having a will notarized and filed can avoid differences and the hurt feelings they could create.

End of life care

Talk with your doctor about your wishes regarding treatment. It’s a good idea to set up a healthcare proxy, or agent, in the event that you are not able to make your own medical decisions. Many people choose a trusted family member for this role. Make sure that your healthcare proxy is aware of your wishes, and that you check in regularly if these change.

Talk with your doctor about potential palliative care and hospice options available to you, and decide what options you would prefer. Some arrangements can be made in advance, others should be discussed with your doctor and your proxy so that your wishes can be honored.

Organ donation

If you would like, you can donate your organs or tissues to science after your death. If this is something you would like to do, it’s important to arrange an anatomical bequest. In many instances, your estate cannot make these decisions on your behalf. Your doctor may be able to put you in contact with groups that will help you with this process.

Funeral plans

Think about how you want to be remembered. Talk with your family about what you would prefer when the time comes. It’s a good idea to make as many arrangements as possible in advance, and to discuss and record others you would prefer.


Last updated: June 18, 2020


FAP News Today 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.