How Family Members Can Help Fabry Disease Patients

How Family Members Can Help Fabry Disease Patients
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Fabry disease is a progressive, rare, genetic disorder that can lead to a number of health issues that affect a person’s everyday life. Following are some ways that family members can assist someone living with Fabry disease.

About Fabry disease

Fabry disease results from the abnormal buildup of a type of fat called globotriaosylceramide (Gb3 or GL-3) inside cells. This buildup can cause a wide range of symptoms including chronic pain, hearing loss, kidney damage, gastrointestinal and cardiac issues, and problems with eyesight. These symptoms can cause significant stress to patients and affect family life in many ways.

Helping with doctor visits

Because of the myriad symptoms they experience, Fabry disease patients have a relatively large healthcare team. Keeping track of all the appointments with doctors and other healthcare providers may feel like a full-time job. The patient may need help, especially since eyesight, hearing, and other problems can affect their ability to handle such tasks on their own.

Monitoring the disorder

You can help your loved one keep track of how the disease is progressing and help them share that information during doctor’s visits.

Accommodating dialysis

If the patient requires dialysis, he or she likely will need extra support. Family life will have to readjust around these vital sessions. Your family member may need help to prepare for, or transportation to and from, the session.

Keeping up spirits

Living with a chronic disease such as Fabry, which affects multiple systems, can lead to anxiety or depression. A support network of friends and family can go a long way in improving quality of life.

Plugging into support

The rarity of Fabry disease can make access to information difficult and time-consuming. This is where support groups can help.

You can register for support services and link up with patient associations on social media. You also may consider the resources that pharmaceutical companies provide.

Helping with diet

Gastrointestinal symptoms are common in Fabry disease. You can help by paying attention to which foods the patient does not tolerate and help  eliminate them from their diet.

A healthy, balanced diet is recommended for Fabry disease patients because it also may reduce the risk of heart disease and improve overall health. You can help by ensuring the patient is getting good nutrition.

 

Last updated: March 12, 2021

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Fabry Disease News 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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