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Let's Show the FDA the Future of EPP....Our Children!

Let's Show the FDA the Future of EPP....Our Children!

The APF is implementing a new photo campaign to the FDA.  We want them to hear our voices loud and clear and see that we are still here, still struggling, and need immediate approval of Afamelanotide 16mg (Scenesse).  The children are our future - let's tell our story to the FDA through photos and notes from all with EPP that this rare genetic disease has an enormous impact on our daily lives, and has since childhood!  We want them to visualize and hear how you feel and how you would function with a treatment.  EPP doesn't only affect you when you are having a reaction - it affects everything you do and how you must modify your life to AVOID a reaction.  We will keep telling the FDA our stories until we have a treatment!

 Follow the instructions below and we will handle the rest.
  1. SEND A PHOTO by mail or email/scan of your child or you as a child. Choose a photo that shows the impact of this disease - either in full protective "gear", having a reaction, or avoiding a reaction.  ** Please indicate if you would prefer your photo not be identifiable**
  2. Write simple comments or a letter expressing your concerns and how a treatment would impact your life. (Ideas:  Need approval now! Suffering every day! Want to go to school just like everyone else! It hurts like_____ (fill in blank)! Approve Afamelanotide now!)
  3. Include your name, address, and contact information
  4. Send photos and comments to the APF office

American Porphyria Foundation
4900 Woodway Drive, Suite 780
Houston, Texas 77056
      5. We will do the rest!

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


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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…