Retroperitoneal Fibrosis Research

Retroperitoneal Fibrosis is a rare disease with little known about the causes or treatments. Because of its rarity, no research has been done in the United States to find any links to possible causes, so it is commonly referred to as idiopathic (no known cause). A case study published in an American medical magazine, by Dr. Pekka Roto of Finland around 1996, made a connection between asbestos exposure and Retroperitoneal Fibrosis. I have been in touch with Dr. Pekka Roto who tells me he is now involved in an updated, more extensive case study in an effort to find possible causes. He also tells me that of the 47 people in this study in Finland, nearly half have had definite asbestos exposure. To me these are staggering statistics. Certain prescription drugs have been banned in the U.S. because they may have a slight chance of possibly causing Retroperitoneal Fibrosis. Yet, even though the case study from Finland was published in one of our own medical magazines, it was not found important enough to be investigated by our own physicians and researchers. This has led me to start this petition which will be forwarded to on to organizations such as: NIOSH (National Institute of Occupational Safety and Health), NIEHS (National Institute of Environmental Health & Safety), NORD (National Organization of Rare Diseases), the American Foundation for Urologic Diseases, the American Kidney Foundation, the American Society of Nephrology, the American Urological Association, Inc. and the National Kidney Foundation .
Comments made by our own physician stating a concern in a sudden increase in the number of patients he has seen with RF, leaves me to believe that this is becoming a very urgent issue. Research needs to begin soon and the more signatures we get, the better the chance we have of being taken seriously. Once you have signed this petition please pass the link on to others who you feel may be interested.

We, the undersigned, are requesting a study be done to determine the possible causes of Retroperitoneal Fibrosis as may be related to asbestos and other possible hazardous chemical exposures.