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 Protect the Future campaign was established to attract and train the next generation of doctors and specialists in the field of Porphyria. Over the next decade, we will lose ninety percent of our valued Porphyria experts. These men and women have led Porphyria research, testing and treatment for the past 30 years. Without financial support, we run the risk of losing knowledge of the disease, quality testing, diagnosis, and treatment, and ultimately a cure.
Protect the Future supports young doctors who work and study with long-time experts, seeing patients and doing research, in order to gain the expertise they will need to care for the U.S. Porphyria patient population for decades to come.
Protect the Future is a separate fundraising campaign with its own specific needs. We are seeking additional donations for the specific purpose of locating and training new Porphyria specialists.
You and I are pulled in so many directions for our donations, such as churches, police leagues and schools. But rarely will we be presented with an opportunity to affect the course of our own lives and those of our children for years to come.
Let’s work together to bring another great specialist into our lives. We are so very fortunate to have the few Porphyria experts who are presently in the field. Now we can protect our own future by adding more doctors.
Donate now! Please make a note that you are donating to the Protect the Future campaign so that we can allocate those funds appropriately.
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