pediatric / adolescent Wegener's

[whatthewhat]

"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.

[whatthewhat]

(And I know several more families whose child was diagnosed with WG before 18 and who still works with a pediatric rheumatologist but has reached adulthood.)

[Pete]

I hope the docs can get your daughter into remission muy pronto!!!

[vdub]

You are right. Certainly not one in a million. One in 500,000 would probably be closer. Its the same with my disease (the GH part). Studies have said 1 in 10 million. Can't possibly be so. I would also cut that estimate in half to maybe 1 in 5 million. I believe wegs itself is underestimated, too. The number I've heard most often tossed about is 1 in 30,000, but I know my rheumy alone has over a 4 or 5 active wegs patients and the population of the city and the drawing area is about 80,000. The number with wegs, either knowing or not knowing, is much more than advertised.

[Alias]

No doubt you are right, Vdub. I might never have been diagnosed were it not for one physician who suggested I get worked up for GPA. I'm sure there are many struggling with mysterious symptoms who have never heard of it.

You are right. Certainly not one in a million. One in 500,000 would probably be closer. Its the same with my disease (the GH part). Studies have said 1 in 10 million. Can't possibly be so. I would also cut that estimate in half to maybe 1 in 5 million. I believe wegs itself is underestimated, too. The number I've heard most often tossed about is 1 in 30,000, but I know my rheumy alone has over a 4 or 5 active wegs patients and the population of the city and the drawing area is about 80,000. The number with wegs, either knowing or not knowing, is much more than advertised.

[Alysia]

Thank you for this important post, wtw, for spreading awarness and for being an address for so many parents. My heart is going out to you and your daughter and all the parents and kids out there, fighting this nasty disease. I keep you in my prayers ❤❤❤

[mishb]

In our Australia and New Zealand facebook group, we have a number of young adults that were diagnosed in their early teens, and also one that was diagnosed age 7.
It saddens me every time I hear of another child being diagnosed, but it also makes me hope that maybe there is a bit more awareness out there now, which is making the diagnosis of WG and other Vasculitis conditions, a bit quicker for our younger ones.

Thank you for all that you do WTW, for the care and help of the parents and family of newly diagnosed children