PVNS sufferers have their own day to make this disease known to those who don't know. Which are still many. Especially doctors who need to know about it.
It's still so unknown that the Rare Disease Day organization as of today doesn't even recognize PVNS as a rare disease. I'm sure that will change soon.
As more people with PVNS get diagnosed, there will be those so frustrated with a lack of information about the disease they will create new lines of communication to bring it to the awareness of those who need to know about it.
We share a similar fate as many others around the world, many who suffer from disabilities. And we have no idea they are even suffering.
http://www.rarediseaseday.org/article/watch-and-share-the-official-rare-disease-day-2015-video
