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Do you really understand your Porphyria?

Hello and welcome to the American Porphyria Foundation.  Many of you are NEW to the APF! Welcome!!!  We are so happy that you are here to learn about Porphyria disorder and how really rare YOU are.

 Our information and links provided are backed by Worldwide Porphyria Experts!  There are many modern day sites and theories about Porphyria and social media groups that may offer personal help or experience.  Caution should be used when looking at information and considering the source.  Ask yourself, Who gave this information to me?  Where did I read such?  Is this a patient themselves, an advocate or a medical professional?  

The more Research and time you put into knowing more about your disease you will benefit and learn the most!  As you read and talk to different ones in the medical community be prepared by writing down in advance your questions?  
Why are you asking this question? 

 Do I personally experience this problem?  

Talk to your Dr! 

 Be brief and to the point! If your physician is not aware about Porphyria please call our office we would be most happy to send a free comprehensive Dr Kit to them.  Our number is 1/866/APF/3635.

Here are a few links to help you be more informed:

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/AIP

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/VP

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/HCP

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/ADP

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/PCT

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/EPP-and-XLP

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/CEP

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/HEP


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Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
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…