This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
The American Porphyria Foundation is launching a brand new look today. You will see this refresh across our communications including the website, seven Facebook groups, Porphyria Post, Twitter, Purple Light Blog, Google and YouTube. We are proud of our new look that represents the people we serve and the group of rare diseases we represent. We remain steadfast in our dedication to support individuals and families whoare impacted by Porphyria through physician and patient education, awareness campaigns, strong advocacy and a relentless focus on research.
Stay tuned for more exciting updates from your APF team in 2018! As always, thank you for your wonderful support.
2018 Heme Biosynthesis and the Porphyrias: Recent Advances - ORLANDO, FL
Mark your calendars to join the American Porphyria Foundation and the Genetic Disease Foundation along with expert physicians from around the world! On Saturday, January 13, 2018 there will be a Clinical Day for Patients which will include in-depth discussion on Erythropoietic and Acute Hepatic Porphyrias with domestic and international experts, interactive Q&A Sessions and much more. Registration is COMPLIMENTARY. If you plan on attending the clinical day for patients, please contact Edrin at the APF office today to register.
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