Being diagnosed with Fabry disease can be a frightening experience. Whether it is familiar to your family or newly discovered, living with or contemplating the potential impacts of the disease are often very stressful. For most individuals with Fabry disease, living a normal unhindered life is difficult if not impossible. The many common symptoms of the disease, while they vary between individuals, almost always have a cumulative adverse effect on an individual's health and quality of life. Therefore, it is very important to seek treatment at the earliest appropriate opportunity, to properly manage the symptoms of your disease, and to do everything you can to be healthy despite your disease.
First, individuals must be aware and manage their disease symptoms and status along with their physicians. Along with the thousands of physicians who are virtually unaware of Fabry disease due to its rarity, there are also an increasing number of physicians and other healthcare advocates who are becoming very knowledgeable about this disease. But even in the case of the more educated healthcare providers, no one can take the time to stay on top of an individual's health situation than the affected individuals themselves along with their supporting family members and friends.
Adult males and females, and parents of children carrying the Fabry gene have must strive to understand their disease, to understand who should get treatment and when, and to understand how they can best help to manage their disease. For specific information about evaluation, diagnosis, treatment, information about affected bodily systems, and information about specific considerations for men, women and children, please refer to appropriate section of this website.
Please contact the NFDF with questions, to recommend improvements to this site, or to recommend other information you feel would help others with Fabry disease.
The remainder of this page is devoted to a discussion about some of the things an individual with Fabry disease or with many other chronic illnesses may do in consultation with your own healthcare provider to stay as healthy as possible in addition to specific management actions for the disease itself.
Maintaining the best health possible is even more important for a person with a chronic illness like Fabry disease! Here is some information followed by some articles to review and discuss with your healthcare provider.
A healthy balance is the key:
Note: Because of the high risks of Fabry disease related heart disease, kidney disease and strokes, many individuals are on 81mg aspirin therapy, and Folic Acid supplements. Please consult your physician to determine if these may be right for you.
The links below do not relate specifically to Fabry disease but may be helpful as general health information to discuss with an individual's healthcare provider.
