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If Finn Can Promote Porphyria Awareness, You Can Too!

If Finn Can Promote Porphyria Awareness, You Can Too!
Finnian, nicknamed Finn, can show us a thing or two about promoting porphyria awareness.  He wears his American Porphyria Foundation bandana proudly. The APF gave bandanas to all the pets, who entered the APF Pet Beauty Contest a few years ago. Finn is a 7 year old yellow lab. His mom is APF member, Kelsey Castro who says of Finn:
He is my best buddy! He is always by my side, especially when I'm not feeling well... I think he can sense it. I got him when I was 14 and in high school, and I'm now in college.  Finn has been my best friend through lots of hard times. His favorite thing to do is go on hikes at a local nature reserve by my house and curling up by our wood stove in the winter.
We also ask you to take every opportunity to spread the word about porphyria.  Your effort can be as simple as purchasing an APF T-shirt or giving out medical information to your doctors or showing the APF Porphyria Live video to your family and friends.  Every community needs to hear about porphyria, and you are the person to do that in your community. Please contact the APF for supplies 713.266.9617.


"Remember.... Research is the key to your cure!"


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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…