Familial amyloid polyneuropathy (FAP) is a progressive disease caused by deposits of amyloid fibrils in nerve cells and organs. As a result, patients experience severe peripheral neuropathy, cardiac dysfunction, extreme weight loss, and muscle wasting, among other symptoms. These symptoms can cause a lot of stress for patients on…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…
If your doctor suspects you have familial amyloid polyneuropathy (FAP), you will be asked to undergo diagnostic tests to confirm the presence of amyloid deposits in your body. Doctors then often use magnetic resonance imaging (MRI) to determine the deposits’ effect on your nervous system, heart,…
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…
Familial amyloid polyneuropathy (FAP) is a rare and complex disease that affects multiple systems in the body. Many physicians are unfamiliar with it and its treatment. This could present a major problem, particularly in a medical emergency. Therefore, if you have FAP, developing and maintaining a treatment plan…
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…
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…