Rare Disease Day

February 29th is Rare Disease Day it is a day to acknowledge that there are many people in the world who are living with diseases that are rare. Here is a link to their Facebook page http://www.facebook.com/rarediseaseday 

I wanted to share this since I have joined the ranks of those with a rare disease. I now fall into the 1.8/ 1000000 people who have PVNS (Pigmented Villonodular Synovitis). I think that the goal of groups like the one I have listed above and  NORD (National Organization of Rare Disorders) http://www.rarediseases.org/  is to raise the awareness of the world to these rare conditions. 

Currently PVNS is not even listed on the NORD site and that is frustrating because there are few people in the medical community who have begun to study this disease. Information is limited and there are no answers and no cure. To my knowledge there is no research being done on this either. 

The one place that I have found that I can get answers is on the Facebook page where others like me have gathered to share our stories and to commiserate http://www.facebook.com/groups/91851410592/ . Unfortunately the stories are all similar few of us are finding doctors who KNOW about this disease and many are being shuttled back and forth from one doc to the next all in the hope that the next doctor will know more. While others are being told that the doctors refuse to care for them any longer. 

Lack of knowledge and lack of funding for research are problematic and we need to find a way to fund research on a National/International level for this disease and for many others. 

Please take the time to educate yourself  and do what you can to help.

Thanks!!!