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We need your Story for the American Porphyria Foundation~ Member Stories Section

Member Stories

Because Porphyria is so rare, many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. The same is true for members of the general public, and this lack of understanding in others can make life much more difficult for people living with porphyria.
We post these stories on our website to help readers connect a name and a life story with the disease. The stories here are personal — they are an attempt to describe what life is like with a rare and complicated disease.
To learn more about the typical symptoms and course of the disease, please see the About Porphyria section of our website.
We hope that these stories will also contribute to general awareness of porphyria, and that this will help more people to be diagnosed promptly and accurately. We thank our members for sharing some of the most intimate details of their lives with others.

 We are in need of your stories.  Can you be involved?  It’s not hard when I wrote mine, I felt very encouraged knowing that others feel the same discomfort, pain the ups and downs of Porphyria, but after reading everyone’s stories I was very encouraged knowing I was not alone.  So please take some time to think about your story and what it means to you and how we can learn about you. IF you would like to send in your story please contact the APF by calling 1-866-apf-3635.  

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…