National Fabry Disease Foundation Support Community

The National Fabry Disease Foundation Support Community connects individuals with Fabry disease, family members, friends and caregivers for support, inspiration and community building... More about this group

Five million

By Brian · New reply June 17, 2013
Journal · 243 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

The Inspire Q&A: Inspire talks with Deanna Attai, MD

By John2 · New reply April 16, 2013
Journal · 16 replies
Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people in this ...

Help with the summer heat

By chickenhawk1981 · New reply April 11, 2013
Discussion in Living with Fabry disease · 2 replies
Greetings everyone. It has been a while since my last post. I am looking for ideas. I have Fabry. I live in the southern part of the U.S. In a mobile home. My air-conditioning unit has died. I am afraid ...

16 year old in wheel chair

By Concerned-Grandma-P · New reply March 27, 2013
Discussion in General discussion · 4 replies
Grand-daughter, junior in highschool, missing 8 - 10 days of school, needs hope. Neurologist says she has Fabry disease. Needs help in daily life ...

"The Fabrys Walkabout" (Coast to coast walk to raise awareness for fabrys)

By TyS4 · New reply March 9, 2013
Discussion in Events and news · 1 reply
On March 1st Courtnay Midkiff is starting his walk from Virginia Beach to California to raise awareness / money for the disease. I just found out about this yesterday. Figured I would share and try to ...

What symptoms do you have?

By broony37 · New reply February 27, 2013
Discussion in Living with Fabry disease · 19 replies
Hi just wondering if anyone else experiences gastrointestinal symptoms as bad as I do and trying to find out more about what most affects others. At the moment I rarely leave the house as my inability ...

Some Excellent News for Fabry sufferers

By Silken · New reply February 17, 2013
Discussion in Treatments · 4 replies
First gene therapy trial launched for Fabry disease Ye have to check this link out :) http://www.albertahealthservices.ca/7888 .asp ...

The Inspire Q&A: Inspire talks with Lindsey Miller

By John2 · New reply February 6, 2013
Journal · 13 replies
We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people featured in our Q&A series ...

We're hiring!

By Walter · Posted January 22, 2013
Journal · 0 replies
Hello everyone, We have a position open with our engineering team at Inspire, and I'd like to share the job description with you in the event you know just the person we're looking for. We found our most ...

Fabry Disease

By broony37 · New reply January 22, 2013
Discussion in Living with Fabry disease · 1 reply
Please follow this link for useful information on Fabry and meet others suffering with this complex disease. https://twitter.com/FabryDisease2 ...

My brother and I were the first

By Spuds · New reply January 22, 2013
Discussion in General discussion · 6 replies
My brother and I were not only one of the first brothers to be diagnosed with fabry but we were also the first brothers to receive the infusions ...

WHAT IS BETTER REPLAGAL OR FABRYZYME

By danny89uk · New reply January 20, 2013
Discussion in Treatments · 11 replies
Can anybody tell me what is better for prolonging my life please thankyou ...

Are all daughters of a father with fabry disease always carriers or have th

By vbness · New reply January 19, 2013
Discussion in General discussion · 2 replies
About 5 years ago my sister was tested for fabry disease and she is a carrier. My daughter was also tested but the gene wasnt found. They told me that I wouldn't need to be tested because my sister has ...

Does anyone have pain like mine?

By Jerry_at_NFDF · New reply January 18, 2013
Discussion in Symptoms · 20 replies
In the medical literature about Fabry disease and in discussions, we always hear about peripheral neuropathy (damage to the peripheral nervous system causing a wide variety of symtoms) and acroparesthesia ...

Mutation

By WifeWillis · New reply January 18, 2013
Discussion in Testing, diagnosis, and inheritance · 7 replies
Where can I learn more about my mutation? I have my results showing which mutation it is, but it's all Greek to me ...

Fabry in children

By Metoyou81 · New reply January 16, 2013
Discussion in Testing, diagnosis, and inheritance · 9 replies
Hi, I'm looking for a little help, I've been diagnosed with Fabry and awaiting results from my three children, my main concern is my oldest son who is 9 and has been complaining from 'pins and needles ...

so alone!

By machaele · New reply January 11, 2013
Journal · 15 replies
My father died of fabry when I was 12. For years I was told I was only a carrier. I have 4 children and my youngest daughter was also diagnosed. For years of being told I was crazy for endless tests for ...

Heat/cold

By Blue234 · New reply January 7, 2013
Discussion in Living with Fabry disease · 4 replies
Hello everyone I'm just curious if anyone who has been getting Ert for a couple years or so has it made you not so Susceptible to feeling bad from the heat or cold? Does it make that go away or make it ...

The Path to ending Fabry's in our Families

By mywaycutty · New reply November 20, 2012
Discussion in Women with Fabry disease · 21 replies
My name is Elida, I am 45yrs old and in 1986 My father , my 6 month old son and myself were diagnosed with Fabrys.. My dad at that point had everything that Fabrys can cause wrong with him. When he was ...