How Family Members Can Help Fabry Disease Patients
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.
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
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
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.