Patients with familial amyloid polyneuropathy (FAP) may wonder how the age of onset of the symptoms relates to the progression of their disease. Here is some information that may answer those questions. What causes FAP? Mutations in the TTR gene cause FAP. These mutations cause…
If you have familial amyloid polyneuropathy (FAP), a progressive neurodegenerative disease, your doctor has probably talked to you about screening for problems with your heart. About 80% of FAP patients have cardiac involvement. If left untreated, heart disease can have serious consequences for your health. What causes heart problems…
Familial amyloid polyneuropathy (FAP) is a disorder in which abnormal clumps of proteins called TTR amyloids accumulate in tissues and organs, interfering with their function. The aqueous humor of the eyes is one place where TTR amyloids accumulate. This is the jellylike substance that makes up most…
If you have familial amyloid polyneuropathy (FAP), a healthy diet may help delay the onset and slow the progression of the disease. To keep track of what you’re consuming, a food diary can help. What is a food diary? A food diary is a daily log of…
Environmental factors such as diet may help delay the onset and slow the progression of familial amyloid polyneuropathy (FAP). Following are some dietary suggestions you may want to consider. But be sure to discuss with your primary physician before making any changes to your diet. Increase hydration FAP is…
Symptoms of chronic disorders such as familial amyloid polyneuropathy (FAP) can present multiple challenges to everyday life. One tool that may help you cope is mindfulness. What is mindfulness? Mindfulness is the practice of being constantly aware of your thoughts, feelings, sensations, and environment. Rather than constantly…
Managing your treatment and care when you have a rare disease such as familial amyloid polyneuropathy (FAP) can be challenging, especially if your care team hasn’t previously treated many patients with your disease. Here are five tips for making the most of your doctor’s visit: Make a list of…
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…
Finding new treatments for rare diseases such as familial amyloid polyneuropathy (FAP) is challenging. One way that patients can help with developing and evaluating new treatments is by participating in clinical trials. What are clinical trials? Clinical trials allow researchers and physicians to test new devices, medications,…
Being diagnosed with a genetic disease during adulthood can be a life-changing event. Between managing your symptoms and addressing the challenges that the disease poses to you and your family and friends, you may be overwhelmed both physically and emotionally. A practice called the spoon theory may help you…