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If your family has been affected by Fabry, consider Fabry Survivors your second home.
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This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
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
BensFriends.org helps 80,000+ rare disease patients every month but until the IRS grants us 501c3 status, we can’t raise money from foundations and corporations. It costs about $2,000 a month to run the 30+ communities. In order to sustain our monthly operating costs, we called for members' donation campaign. Would you help us keep the miracle going at Ben's Friends? If you can, please visit our Donate page on this link.
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.
In America, this Thursday is Thanksgiving. We spend the day thinking about what we are grateful for and also eating a lot of turkey and pie. :)I thought it would be fun to start a discussion on what we're all thankful for. I'll get it going:I'm…Continue
This was posted on the main moderator site, and I would like to share it with you. Red joined Ben's Friends to support his wife who suffers from TN (Trigeminal Neuralgia) he has become a moderator for that site, and an advocate for his wife and…Continue
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
Posted by Scott Orn on December 9, 2013
Added by Ben Munoz on December 7, 2013
Posted by Scott Orn on November 28, 2013
Added by Armando Abrero on December 8, 2013
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Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to firstname.lastname@example.org.