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…
Health Insights
Building Emotional Resilience When You Have Fabry Disease
Emotional resilience is the ability to adapt to stressful situations and cope with life’s ups and downs. Here’s how you can develop emotional resilience and use it to help you in your journey with Fabry disease. What is Fabry disease? Fabry disease is a progressive rare genetic disease…
Fabry Disease and Shoshin
A Japanese concept called shoshin might help people with diseases such as Fabry disease change their perspective and see their world, and their disorder, in a different light. What is Fabry disease? Fabry disease is a progressive and rare genetic disease. It results from the abnormal buildup of a…
Importance of Advocacy for Fabry Disease
If you or a family member has a rare disorder such as Fabry disease, you may want to get involved with health advocacy efforts. In general, these efforts promote health and access to care at individual and community levels. Here is more information about advocacy and ways in which…
Respite Care for Fabry Disease
Being a primary caregiver for a patient with a rare disorder like Fabry disease can be physically, mentally, and emotionally draining. As this disease progresses, patients also tend to become more and more dependent on care. Respite care offers caregivers time in which to take a break, relax, and…
Preparing for ERT Infusion for Fabry Disease
Enzyme replacement therapy (ERT), which provides the specific enzymes missing in Fabry patients, can help to ease or even stop your symptoms if you have this disease. However, it is a lifelong treatment, with the enzyme given continuously over time. Here is an overview of what to expect if…
Fabry Disease and Hearing
Hearing loss and vertigo are common symptoms of Fabry disease. This article discusses how Fabry disease may affect your hearing, and looks at ways that doctors may diagnose and treat hearing problems. How do hearing and balance work? Hearing is a complicated process that involves multiple structures in…
Fabry Disease and the Heart
Fabry disease leads to heart complications in more than 50% of patients. Here is more information about these complications and how doctors diagnose and treat them. Heart problems in Fabry disease Patients with Fabry disease may experience a number of cardiac problems. The most frequent is left ventricular hypertrophy,…
Multidisciplinary Care Team for Fabry Disease
If you have Fabry disease, you may need to see a multidisciplinary team of healthcare providers in addition to your primary care physician. Fabry disease is a rare genetic disorder characterized by the buildup of a fat molecule called globotriaosylceramide (GL-3 or Gb3) in the blood and tissues of the…
Recreational Therapy for Fabry Disease Patients
Living with a chronic disorder such as Fabry disease can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your psychological and physical well-being. About Fabry disease Fabry disease is a progressive rare genetic disease that results from the abnormal buildup of a type…
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