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Additional Medical Information

Additional Medical Information

The APF promotes treating your health with the respect it deserves, by looking to reliable sources for your medical information. The experts on our Scientific Advisory Board advise patients to rely on sites like the Centers for Disease Control (CDC), the National Institutes of Health (NIH), the APF website and others backed by scientific research. The resources below are all good places to start.
University of Capetown Porphyria Center
University of Queensland Porphyria Research Unit
European Porphyria Initiative
Annals of Internal Medicine
Merck Manual of Diagnosis and Therapy — Remember that diagnosing Porphyria requires the proper lab tests, but Merck is another good source of treatment information.
U.S. Food & Drug Administration
General Health information from NIH
MedlinePlus from NIH
Genetics Home Reference from NIH
Medical Dictionaries
We suggest the dictionaries listed below as a good place to start if you need help understanding some of the medical terminology on this website.

Porphyria Dictionary from the University of Cape Town Porphyria Center
Merriam-Webster Medical Dictionary
Genetics Glossary from NIH

Please take a moment to research this information and incorporate into your medical information for your Doctors, they are sure to appreciate this information as great resources.

Remember....Research is the key to your cure!


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The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…