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
Want your physician to become better educated about your disease?
Personally invite them to this important symposium!!!
2018 Heme Biosynthesis and the Porphyrias: Recent Advances
Orlando, Florida - January 12-14, 2018
This three day symposium will focus on the most recent findings on the molecular biology and regulation of heme biosynthesis and the clinical features, pathophysiology, and current treatment of the acute hepatic and erythropoietic porphyrias. Day 1 will be devoted to the clinical aspects and current treatments of each Porphyria. Days 2 and 3 will focus on the latest research findings on heme biosynthesis and emerging molecular-based treatments for the porphyrias. Also, there will be a special session for patients on the latest advances in the Porphyrias.
This symposium is open to all healthcare professionals including clinicians, researchers, nurses, genetic counselors, Junior Faculty, Pre/Post Doctoral students, fellows and medical students.
The Symposium offers up to 25.5 CME Credits. The Registration fee includes meals and the poster reception. Orlando has an international airport and outstanding attractions such as Disney World and Universal Studios. The hotel rates are attractive ($133/night plus tax, single or double), with parking, Internet, and resort fees included. The room rate is available for three days after the symposium, on a first come basis.
To share this information with your doctor, you can provide them with the registration link or print and share the attached brochure and take to your appointments with you: www.porphyriassymposium.com
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