"One-in-a-million" is the phrase I've heard a lot about pediatric-onset Wegener's. Today I reached the point of knowing 50 American families who currently have a child under the age of 18 who has been diagnosed with GPA (I also know a few families in Canada, one in Hungary, and one in India.) There are 74 million children in America. When you factor in people who aren't on FB at all, or people who haven't posted in any FB WG/GPA group about their child, or who haven't posted on here, and of course factor in the extreme odds against having a child suffering from WG correctly diagnosed, then the initial 1-in-a-million number is clearly wrong. Especially in this month of "Vasculitis Awareness" it is as important as ever to get the word out about pediatric symptoms: growing pains, ear and sinus infections recurring around onset of puberty, unexplained rashes, weight loss accompanied by lack of appetite for more than a month, - plus the "regular" WG diagnosis symptoms of blood in urine or stool or phlegm that is unexplained, hearing loss, vision issues. WG hits kids harder and faster - kidney transplants are more common in ped-onset WG - and the sooner (if at all!!) WG can be diagnosed and effective treatment began, the better.
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