How Will FAP Affect My Lifespan?

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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If you’ve been diagnosed with familial amyloid polyneuropathy (FAP), you may be wondering about how the disease might affect the length of your life.

There are a number of factors that affect lifespan for everyone. These include genetics, environment, and family history. It’s important to talk with your doctor about those factors most important for you.

How do genetics affect lifespan?

FAP is caused by mutations in a gene called TTR. These lead to the protein that the gene encodes to misfold. The misfolded proteins accumulate in cells and tissues, interfering with how they work. There are many different TTR mutations that can cause FAP. Different mutations can affect both disease progression and symptoms.

On average, FAP patients live about 10 years after a diagnosis, although those whose disease is more slowly progressive can live for many years. Researchers are working to develop new and better treatments, beyond those now used to manage symptoms and slow progression.

Can I get counseling?

Finding out you have a disease that affects your lifespan can be frightening and overwhelming. It’s important that you get help if you feel need might it. Your doctor can direct you to counseling services. Some people may prefer to speak to a counselor associated with their religion.

Many people find it difficult to know when (or if) to talk to family and friends about their diagnosis. You shouldn’t feel that you have to discuss it with those you prefer not to.

You may also be benefit from joining a structured support group with other patients.

How to plan for the future?

A disease that can shorten your expected lifespan makes it important that you plan for the future.

Your doctor’s office can direct you to local services, but many people will need to talk to an estate lawyer to ensure that their affairs are in order.

You should also discuss with your doctor your wishes for palliative care. If there are specific things that you want, discuss with your care team, and make sure that your wishes are recorded in writing.


Last updated: May 14, 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 providers 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.