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
Are you ready to face new challenges with your Porphyria? Need assistance in learning and understanding what to say to your treating physician. No matter where you live be prepared.
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.
