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If your family has been affected by Fabry, consider Fabry Survivors your second home.
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Acute Disseminated Encephalomyelitis (ADEM)
Arteriovenous Malformation (AVM)
Atrial Septal Defect
Charcot Marie Tooth (CMT)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Guillain-Barre Syndrome (GBS)
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
"We're In This Together: Stories & Tips from Patients with Rare Diseases" can be found HERE.
Fabry disease is a fat storage disorder caused by a deficiency of an enzyme, alpha-galactosidase A (also called ceramidetrihexosidase), involved in the breakdown of fats. Since fat doesn't break down properly, part of it (globotriaosylceramide, also called Gb3 or GL-3) accumulates in the blood, blood vessels, and organs of the body and causes damage.
Fabry disease may be hard to detect because several of its signs and symptoms overlap those present in other diseases and conditions. Patients do not typically have all of the symptoms associated with Fabry, while others may develop them at different times throughout their lives.
It is important that the doctor finds out whether there is a family history of Fabry disease whenever it is suspected.
Ben Munoz and Ben's Friends Patient Communities were featured in Forbes over the weekend! Thanks to the Members who talked to the author, Sarah McKinney.…Continue
Hi I'm a 38 year old female I have been poorly for the last 7 years. I am just waiting for my results if I have Fabry disease. My symptoms are nerve damage in my hands and legs numbness and burning mainly in my feet, bloated stomach, hearing is fine…Continue
Scientists in Calgary has launched the first gene therapy clinical trial in the world for Fabry disease.Extracting stem cells from volunteer patient Christopher Armstrong, 34, of Calgary, researchers will now insert a working copy of a new gene into…Continue
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