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PORPHYRIA DOCTOR FINDER

PORPHYRIA DOCTOR FINDER

  Every day the APF receives requests
for a doctor who can diagnose and treat porphyria. The main question we hear
is, “Where can I find a doctor to treat me?” In the past, the APF has only given
out the names of doctors who were experts in the porphyrias, but the number of
experts is very small. However, our policy has changed a bit since there are now
5000 members and so few experts. Many of our members have told us that their
doctor has some measure of knowledge about the porphyrias and that their doctors
diagnosed and treated them well. A few years ago, we began to collect the
names of those doctors around the country and placed them on our database. We also sent out several thousand
very comprehensive Physician Education packets to doctors who were interested in learning about porphyria. At the
behest of many of you, we created FIND A DOCTOR section on the APF website. Check the FIND A DOCTOR section
and see if a city near you is listed. Then call the APF for the doctor’s contact information. Watch the website often
as the section will be updated often. Experts are also listed for an appointment. If you have a great doctor, please
contact the APF.  (1-866-APF-3635)

****Note we cannot validate the level of knowledge of any of the listed doctors other than the porphyria
experts. See porphyriafoundation.com.

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


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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…