Jerry's Fabry Disease Blog

Keeping the Fabry community informed

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Jerry's Fabry Disease Blog was created to spread awareness about Fabry disease, a rare genetic disorder, and to share news and information about what is happening in the Fabry community. The blog is one component of the National Fabry Disease Foundation's social networking program.

Classic Fabry disease is a progressive and destructive disease. With enzyme replacement therapy (ERT) there is evidence that disease progression can be slowed down or halted and in some cases damage to organs can be reversed if treatment is started early enough. Being a progressive disease, it is important to do everything we can to stay as healthy as possible to stay strong for the fight ahead. To me, this means a lot more than just taking enzyme replacement therapy. ERT is the starting point and is the most important step to stay as healthy as possible, but there is a lot more to do.