Porphyria
Porphyria
This is a new section on the orphan disease referred to as Porphyria. I must confess that I am just learning about it and have recently discovered that this often hereditary condition runs in my family. 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.
The American Porphyria Association
Testing information for Porphyria
A Concise Listing of Porphyria Information - AIP
Informative information on Porphyria
A list of physicians that specialize in the diagnosis and treatment of porphyria