The Kaiser Papers A Public Service Web Site   
  In Copyright Since September 11, 2000
This web site is in no manner affiliated with any Kaiser entity and the for profit Permanente Permission is granted to mirror this web site - Please acknowledge where the material was obtained.
 Link for Translation of the Kaiser Papers 
PATHFINDER(search)  |   ABOUT US  |  CONTACT  MCRC  |  PRIVACY POLICY

Porphyria

This is a new section on the orphan disease referred to as Porphyria.  Today, many cases of Gulf War Syndrome are also being classified as a form of porphyria and I have learned that although this is classified as an orphan disease is not but is instead a rather common disease which is often just not considered by a physician.

The information that I have received from people with this disease regarding Kaiser and the Permanente, indicates to me that in my opinion this is over the heads of most Kaiser physicians.  This disease is really not that rare however it is often misdiagnosed as many other different conditions or diseases.  The testing for Porphyria is not that complex, however it is currently done at only a few facilities in the world.  I believe this is because most physicians have very little knowledge of this disease, or else they would indeed order the testing on a more regular basis. Again the testing is non invasive and not complex.  Generally it is just a urine or blood test that is sent out to a lab.

Kaiser is known for treating just about all diseases and conditions with drugs.  Unfortunately for the misdiagnosed Porphyria patient, drugs are really the last thing they should have prescribed for them.  Testing is inexpensive when you consider the cost for  treatment of misdiagnosed diseases that Kaiser often treats patients for.  Porphyria testing should be done on a more routine basis.
 

Information on Porphyria

The American Porphyria Association

Testing information for Porphyria

A Concise Listing of Porphyria Information - AIP

Informative information on Porphyria

What is Porphyria?

A list of physicians that specialize in the diagnosis and treatment of porphyria


kaiserpapers.org