FAQs About FAP

Familial amyloid polyneuropathy (FAP) is an inherited, progressive disorder that can lead to multiple health issues affecting your everyday life. Here are some frequently asked questions (FAQs) about FAP.

What causes FAP?

Mutations in the TTR gene cause FAP. The mutations lead to the formation of abnormal protein deposits around peripheral nerves and other tissues.

How does someone get FAP?

FAP is an autosomal-dominant disease. This means it develops even if a child inherits a single copy of the faulty TTR gene from one parent. That parent also would have FAP. However, there would be a 50% chance of passing the healthy copy of the gene to their children, who would not inherit the disease.

Should I have a special diet?

Eating a heart-healthy and well-balanced diet is always a good idea. If the disease affects your kidneys, you may need to eat a diet low in protein and/or sodium. Speak with your physician about any dietary changes, and take no vitamins or supplements without consulting your healthcare team.

Should I try alternative remedies?

There is no evidence that alternative remedies, including vitamins or dietary supplements, are helpful in FAP. In fact, some of them, including green tea, St. John’s Wort, turmeric, or vitamin C, may be harmful or may affect your body’s response to medications.

What kind of doctor should I see?

You need someone who specializes in amyloidosis. If you need such a specialist, you may get a referral from the Amyloidosis Foundation. Depending on your symptoms, that specialist will coordinate care with other specialists, including a hematologist, neurologist, cardiologist, nephrologist, and gastroenterologist.

Can I exercise?

Exercise can benefit the overall well-being of FAP patients. However, if there are amyloid deposits in the heart, exercise should be light. Consult with your healthcare team about what exercise intensity is right for you.

Are surgery and anesthesia safe?

If you become ill or need treatment or surgery for another condition, it’s crucial that you inform the treating physicians about your disease so you can receive the care you need. For instance, the team must take great care during procedures to maintain blood pressure and fluid balance. There also is a tendency of tissues containing amyloid to bleed and poorly heal.

Last updated: Feb. 4, 2021

***

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.