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Fabry disease stories
Was not diagnosed till my 3rd stroke at age 34. Now 38 years old total of 6 strokes. The last stroke was February 2, 2016. Was on the right side where the others have been on the left. I actually feel better than prior. My eye site is better as well ...
Views: 777 Feb 17, 2016, 11:23 PM by Troy
1980's- gastro issues/ burning hands and feet. Told females weren't affected so couldnt be Fabry's. Dad diagnosed in 1960's so I was tested at birth and always knew "carrier!"
Dad had kidney/ strokes. Sister, 2 nephew and 1 niece with Fabrys.
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Views: 745 Feb 17, 2016, 3:22 PM by Debs
Born and raised in Tokyo. I also have an American cidesin ship because my mother is American.
I am a university student now.
I get my treatment once in 2 weeks. Don't have much difficulty in Daly life but I can't exersis alot do to my Simpsons of h...
Views: 687 Feb 18, 2016, 2:41 AM by Noah
I was diagnosed in 2014 and started ERT in April 2015 for fabry. It has signicantly affected my heart, which is enlarging. Hopefully treatments will arrest this and maybe even improve it. I am living a good life and am very grateful...
Views: 681 Feb 18, 2016, 9:29 AM by Carol Smith
I am the only person in my family to have Fabrys. I was diagnosed by my optician. It's ice to have a name to this disease as I have lived with it since I was 5 years of age. I have a mutant gene, so Fabrys starts with me and ends with me. I'm under t...
Views: 649 Feb 17, 2016, 1:16 PM by Rachel
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