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 Cook brothers, Cason (11) and Caul (10) have started a Porphyria Awareness Week HAT DAY tradition in their home town of Vernon, Texas. Both brothers have EPP and have set a great example about enhancing awareness of the disease in their own local area. The boys wanted to raise money for the APF, too, so they asked the school board if they could do an awareness event and raise funds for the APF by hosting HAT DAY where everyone at their schools who wanted to participate could wear a hat in honor of the brothers and bring one dollar for the APF. The students loved the idea. It also gave Cason and Caul a chance to teach their school mates about porphyria, especially EPP. The boys explained about not being able to be in the sun and how it affects them, thus giving their friends a greater understanding of the severity and complexity of EPP.
Cook Family: L-R, Caul, Cason, Lee Ann, Chris
Also, employees at many businesses could
do the same by bringing a dollar and wearing a hat every day of Awareness
Week. Their whole community got involved and businesses even
contributed by giving discounts. The Cook family also hosted another successful
fundraising and awareness event at their church. This was such a wonderful
and fun way to promote awareness and raise fund for physician education.
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