I cringe every time I hear the statistic "1 in 1.8 million people have it in the entire world". Wrong!
When I first discovered this statistic I thought I was pretty special. The likelihood of finding someone else with it would be minimal. But within a month of being diagnosed with PVNS I met someone else with PVNS. She lived in my city which has less than 1 million residents. Then I learned over several years that many people have it in my city. I started tracking cities populations and the amount of people I could locate who had it in those places and calculated it's closer to 1 in 250,000 and maybe even less than that.
I then started tracking where the statistic came from. It was obviously regurgitated by people (mostly doctors) who simply googled the statistic. No real research about where that statistic came from because I was able to track this statistic back to the 1980s. And within a year I learned about at least 1000 new cases through support groups I am part of. And those are just the cases I know of.
I heard of a doctor who treats patients in an African village and was quoted as saying "I see PVNS cases all the time." ALL THE TIME! That doesn't sound too rare in remote villages of Africa.
Only recently did the World Health Organization recognize PVNS as an actual thing. The W.H.O. still hasn't responded to my requests on where they stand on the statistic. I've been attempting contact with them since 2013.
The most shocking revelation I have come across explains why this stuff is so rare. IT HAS DIFFERENT NAMES! And the doctors in the bigger cities that see these tumors consistently will acknowledge that it has different names. In fact there are medical students in the Netherlands insisting that PVNS is now called TGCT, Tenosynovial Giant Cell Tumour. That could explain why it seems so rare, because if the name keeps changing of course it is going to sound rare. I asked the students why the name change and their reply was "That's what the W.H.O. calls it." Well the WHO only started recognizing PVNS, doesn't have an answer about statistics, and now that it knows about it changed its name?
I'm not sure if I give much credibility to anyone releasing information about this disease because they don't have any facts, or a common name for it. All I know is that the statistic is wrong.
