Patient Comments: Fabry Disease - Symptoms

Question:

What symptoms have you or someone you know experienced with Fabry disease? Submit Your Comment

Comment from: Family With Fabry, 35-44 Female (Patient) Published: November 01

My father died at 42 from a kidney problem, he suffered from all kind of sickness his whole life. We just thought he had bad luck. His mom died at 32 in a wheelchair, from severe arthritis. We are 5 sisters and the older one got a brain clog and lost motion in half of her body including her eye. We all suffered from pain in feet and hands when we were children, until we reached our 30s. Three of my sisters’ sons experienced the same pain and they are all teenagers. One of them start searching the web for the cause of our sickness and he discovered we have something called Fabry disease. He was diagnosed by a test on his eyes and he is receiving treatment every two weeks and he feels a lot better he can almost have a normal life. We all know now that we have to get tested for the sickness but insurance won’t pay for it.

Comment from: Fabber girl, 35-44 Female (Patient) Published: November 12

I have almost every symptom of Fabry disease on here. My father was 36 years old when he passed. My grandma was 36 also. I also have 3 boys with Fabry disease.

Comment from: Mona, 55-64 Female (Patient) Published: August 20

I wonder why insurance doesn't cover Fabry disease. I have been diagnosed with fibromyalgia. I have been told I should be tested for Fabry (because of red dots on my torso), but haven't yet. I have always thought fibromyalgia wasn't correct. But whatever it is, I have been having all those symptoms for at least ten years now. Some of my kids have been complaining of same pains. I am 55 and have 5 grown children.

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