How family members can help patients with Fabry disease

Fabry disease is a progressive and rare genetic disorder that can lead to a number of health issues that affect a person’s daily life. Here are some ways that family members can help someone 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 build-up can cause a wide range of symptoms, including chronic pain, hearing loss, kidney damage, gastrointestinal and heart problems, and vision problems. These symptoms can cause significant stress for patients and affect family life in several ways.

Help with doctor’s visits

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

Monitor the trouble

You can help your loved one keep track of the disease and help them share this information during doctor visits.

Welcome dialysis

If the patient requires dialysis, he or she will likely need additional support. Family life will have to be readjusted around these vital sessions. Your family member may need help getting ready for or getting to and from the session.

Keep morale

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 the quality of life.

Connect to support

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

You can sign up for support services and connect with patient associations on social media. You can also consider the resources provided by pharmaceutical companies.

Help with the diet

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

Eating a healthy, balanced diet is recommended for patients with Fabry disease, as it may also reduce the risk of heart disease and improve overall health. You can help by making sure the patient is getting good nutrition.

Last updated: March 12, 2021

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Fabry Disease News is strictly a disease news and information website. 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 doctor or other qualified healthcare professional with any questions you may have regarding a medical condition. Never disregard or delay seeking professional medical advice because of what you have read on this website.

Mary M. Chapman began her professional career with United Press International, running both printing and distribution offices. She then became a correspondent in Michigan for what is now Bloomberg BNA, where she primarily covered the automotive industry as well as legal, tax and regulatory matters. A member of the Automotive Press Association and one of a relatively small number of women on the beat of the car, Chapman has discussed the automotive industry on several occasions for National Public Radio, and in 2014 was selected as a judge. honorary at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national media outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News, and Detroit Free Press. Winner of the Society of Professional Journalists Award for Outstanding Reporting, Chapman has published dozens of articles in The New York Times, including two on the front page. She has completed a manuscript on century-old car enthusiast Margaret Dunning, titled “Belle of the Show”.

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Özge holds an MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University, London. She worked as a postdoctoral research associate at the University of Leicester for six years in the field of behavioral neurology before embarking on science communication. She worked as a research communications manager at a London-based charity for almost two years.

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