Support Groups for People with FAP and Why They’re Important

When you’re diagnosed with a disorder as rare as familial amyloid polyneuropathy (FAP), support groups can help you feel less isolated and better able to cope with your disease.

What is FAP?

Also called transthyretin amyloid polyneuropathy, FAP is a progressive genetic disease caused by the abnormal deposition of proteins or amyloids around peripheral nerves and other tissues.

When do symptoms appear?

FAP symptoms vary widely, as can the age at which they first appear. Typically, symptom onset is after age 30, but it can be as young as 20 and as old as 80. Because the appearance of a genetic disease can be a shock for an adult, support groups can help both in managing your feelings and thinking about the future.

Some FAP patients never experience symptoms, but can pass the defective disease-causing gene to a child. This is another point you may wish to discuss with other patients, some of whom may also be dealing with it. Your family may want to join the group as well.

Benefits of support groups

Participating in a support group — online or in person — provides you an opportunity to be with others facing a common challenge; people you’re likely to understand and who are likely to understand your concerns and goals.

The benefits of joining a support group range from combatting feelings of loneliness and isolation — or simply being judged — to easing those of fatigue, depression and anxiety. Support groups also help in learning coping skills, and keeping you motivated. They often are sources of ways to better understand FAP, offer other resources, and are places for practical feedback about treatment options — all things that help to strengthen your sense of empowerment.

For many people, health-related support groups fill the gap between medical treatment and emotional support. Your relationship with your physician may not be one of adequate emotional support, and your family and friends may not fully grasp how a FAP diagnosis affects you.

Nonprofit advocacy organizations, clinics, hospitals, or community organizations can all offer support groups. These groups may also be independent of any organization, and run entirely by group members.

Links to some FAP support groups

Here are links to some support groups, and to patient organizations that can help you plug into a support group:

• hATTR-Hereditary-FAP-FAC
• Amyloidosis Awareness
• Amyloidosis Foundation
• Smart Patients Amyloidosis Support Group
• Amyloidosis Support Groups
• Amyloidosis Research Consortium

Last updated: May 21, 2020

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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.