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 APF is sending out letters to all physicians from our data base about the Longitudinal Study of the Porphyrias. We also provide information about the CME (Continuing Medical Education) course (a free, internet-based activity). The title of the course reads: "The Management of Acute Porphyrias: Improving Diagnosis, Treatment, and Standards of Care".
This activity is intended for gastroenterologists, hematologists, emergency department physicians and nurses, hematologists, oncologists, obstetricians/gynecologists, primary care providers, dermatologists, endocrinologists, nurses, pharmacists, and other healthcare professionals who manage patients with acute porphyrias.
The goal of this activity is to explore the challenges involved across specialties in identifying and managing patients with acute porphyrias.
Upon competition of this activity, participants will be able to:
Detail the history, signs, and symptoms that point toward an appropriate diagnosis of acute porphyria
Discuss the optimal methods for making the diagnosis of acute porphyria
Evaluate acute and long-term porphyria treatment options
Authors & Affiliations:
Herbert L. Bonkovsky, MD, Owen M. Lander, MD, Gale W. Groseclose, RN, BSN.
If you would like us to send your doctor information about the current studies and a CME card, please let us know 713.266.9617.
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