Support from Family Members for FAP Patients

Support from Family Members for FAP Patients
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Familial amyloid polyneuropathy (FAP) is a progressive disorder that can lead to multiple health issues that affect your everyday life. Here are some ways in which family members can help support a person living with this rare disease.

What is FAP?

FAP patients experience severe neuropathy (damage to nerves) and cardiac dysfunction. It is characterized by the formation of amyloid deposits in the nerve cells and elsewhere in the body.

Wide-ranging symptoms include cardiac issues, bowel dysfunction, nausea, and vomiting, postural hypotension (low blood pressure when standing up from sitting or lying down), shortness of breath, and weight loss.

How family members can help

FAP can affect family life in many ways. The disorder and its symptoms can cause significant stress, especially if not managed well.

Monitoring the disorder

Family members can help patients keep track of how their disease is progressing, and help them share that information during doctor’s visits.

Help with isolation and loneliness

While FAP patients are trying to cope with the pain their disease may cause, they also may be dealing with loneliness. A 2020 observational quality of life study published in the Orphanet Journal of Rare Diseases found that depression or anxiety was present in 57% of people with FAP. Family members can help by including their loved one in as many outings and activities as possible.

Help with day-to-day needs

Because it may be difficult for FAP patients to get around, making sure their immediate needs are being met is important. Neuropathy symptoms include numbness, limb weakness, “pins and needles” in feet and hands, and carpal tunnel syndrome, which develops as the result of the compression of the median nerve and causes pain and gripping difficulties. These all can make it difficult for the patient to complete daily chores.

Liver transplant support

Some patients with FAP may need to undergo a liver transplant. If this is the case for your family member, make sure they have all the information necessary about the procedure. Also, remember that following the transplant they may need extra support for a while.

Plugging into patient and caregiver support

The rarity of FAP can make access to information difficult and time-consuming. This is where advocacy and support groups can help. You can register for FAP support services and connect with patient associations on social media.

 

Last updated: Jan. 14, 2021

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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 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. 

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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