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Porphyria Post

Porphyria Post
Facebook Live with Dr. Bruce Wang
MARK YOUR CALENDARS!
Wednesday, December 4, 7-8 pm EST
and
Thursday, December 5, 1-2 pm EST

The APF will be holding two Question and Answer Facebook Live sessions with Porphyria expert Dr. Bruce Wang, of the University of California, San Francisco Porphyria Center.

We are very excited and appreciative of Dr. Wang for sharing his expertise with our community. These will be exceptional sessions that you won't want to miss!

GivingTuesday is a global day of giving celebrated the Tuesday after Thanksgiving in the United States.

Please consider supporting the APF on Tuesday, December 3rd.

When you support the APF, you are making a contribution to an organization that provides solid porphyria education, hope and essential support to those affected by porphyria. You can be proud to be an integral part of the help we provide patients on the road to accurate diagnosis, proper care, and hopefully someday a cure.

Happy Thanksgiving!
We are thankful that you all are part of the APF Family and our warmest wishes for a happy holiday go out to you and yours.
The APF Office will be closed Thursday and Friday, November 28 & 29, 2019 for the Thanksgiving Holiday.
RSVP TODAY
Patient Education and Support Meeting - Orlando
LOCATION
Hilton Garden Inn, Poseidon/Neptune Room, Orlando at SeaWorld 6850 Westwood Blvd, Orlando, FL 32821
DATE AND TIME
12/08/19 6:30pm - 12/08/19 8:30pm
The American Porphyria Foundation will be hosting a Patient Education and Support Meeting in Orlando, FL on Sunday, December 8. RSVP TODAY!
I'll be there!
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I can't make it
Get Involved
Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

American Porphyria Foundation| 1.866.APF.3635 porphyriafoundation.org
"Remember....Research is the Key to Your Cure!"

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Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

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…