Skip to main content

APF is #Houston Strong!


The American Porphyria Foundation office located in Houston, TX remains closed due to the extreme flooding from Hurricane Harvey. All office staff are safe. Please continue to contact us with any needs as we will be checking voicemail and email on a regular basis. We will inform you when the office has re-opened. For those with questions that need to be answered with urgency please contact Desiree Lyon, Executive Director at 713.857.0995. Thank you.
IMG_4995 
 FullSizeRender
WOODWAY DRIVE - Directly across the street from where the APF office is located.
 IMG_5006
IMG_4987
 IMG_4992

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

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 ibup…