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
I'm 18 years old and have experienced pain after staying in the sun since I was about 2 years old. When I was 2, I was outside and all of the sudden I started crying. Nobody knew why and my parents asked themselves whether or not I was pretending.
Have you ever been involved in Clinical Studies or an observational study? Please give serious thought to joining. Please contact the APF at 1.866.APF.3635.
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
