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.

With over 3,300 peer-reviewed medical journal articles in the U.S. National Library of Medicine at the time of this post, there is a great deal of information available about the common symptoms of Fabry disease. At the same time, the literature confirms the occurrence, age of onset and severity of common Fabry disease symptoms varies greatly among individuals ... and it indicates much about Fabry disease is still not well understood. When I have health problems related to common Fabry disease symptoms, I tend to think my health problems are the natural progression of my disease as I age. Reading posts by others on the Fabry social networking sites, I think many others do the same.

In my past, I was never felt comfortable with the words “pain crisis” to describe the periodic episodes of pain and fever that overcome me from time to time. At the same time, I never gave it much thought, at least not until I decided to write about it. One of the ways the Merriam-Webster dictionary defines the word crisis is “a paroxysmal attack of pain, distress, or disordered function”. The dictionary describes paroxysmal in a medical sense as “a fit, attack, or sudden increase or recurrence of symptoms”.