An exhaustive family tree analysis is critical!
Please contact the NFDF so we may facilitate preparation of your family tree. Others who do not know they have Fabry disease may be unknowingly counting on you to improve and even save their lives!
Many people are living their lives with Fabry disease symptoms without realizing why they are experiencing a diminished quality of life or life threatening health complications. We suspect that the occurrence of Fabry disease is far greater than the most common published estimate of approximately 1 in 40,000 males. While there is no published estimate of occurrence in females, we also know that many more females are affected with Fabry disease than once thought. Facilitating increased efforts to identify individuals with Fabry disease is one of NFDF's highest priorities.
Through identification of individuals at risk for Fabry disease, through diagnosis to confirm who is affected, and through evaluation of an individual's symptoms to determine disease progression, individuals affected with Fabry disease will have the knowledge and the power to:
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better understand the symptoms and health implications of Fabry disease
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make informed decisions about healthcare management and treatment opportunities
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understand who else in a family with Fabry disease are unaware and/or at risk
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if affected, get evaluated to learn how Fabry disease is affecting them
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prevent the tragedy of serious sudden or prolonged health problems for an affected individual that could have been avoided or minimized
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if affected, get treatment as early as possible based on a physician's recommendation
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learn about where to go to get help
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help so many others by providing information about Fabry disease
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assist to update the true incidence rate of Fabry disease to ensure Fabry disease gets the public recognition and support required to improve education, improve treatment, reduce costs, and to encourage continued research.
Identification of individuals with Fabry disease is the key to a better life for so many people. The NFDF is committed to helping to ensure that all individuals with Fabry disease are identified, diagnosed and treated in time to avoid a diminished quality of life or life threatening consequences.
Please contact us for assistance in facilitating prepartion of your family tree!
