APF at Digestive Disease Week
The APF sent member and volunteer Judy Phelps to educate doctors about acute porphyria diagnosis at the Digestive Disease Week meeting in Chicago May 31-June 3.
Judy was invited to help staff the exhibit booth for the rapid porphobilinogen (PBG) test kit, the screening test for acute porphyria. Judy tells us "it was a wonderful experience and I hope I helped some. I had so many doctors sit down with me and talk and ask questions, almost everyone took the APF literature." Porphyria is only one among more than 6,000 rare diseases, so it is understandable that the diagnosis is sometimes missed. Educating doctors about the hallmark symptoms of an acute porphyria attack and the best first test to choose for diagnosis is vital to improving the lives of porphyria patients.
The PBG test is the first step in determining if a person has an acute porphyria or not. This is different from testing for urinary porphyrins. The rapid PBG test can be done immediately when an acute porphyria attack is suspected and does not require a 24-hour urine collection.
Click to learn more about what porphyria is and how it is diagnosed.
