Wednesday, September 11, 2013

American Porphyria Foundation Media News


Even for some of the best minds in medicine, porphyria can be puzzlement. When porphyria is unrecognized, patients are often given medications that worsen their condition, undergo multiple unnecessary and dangerous surgeries, or suffer permanent skin damage, severe liver disease or other complications that could be avoided if the disease were better recognized.
Porphyria is known as "the little imitator," because it mimics so many more common conditions. Acute porphyria has been called the "Tic-tac-toe disease," because before the advanced imaging technologies (C/T, MRI, ultrasound) we have today were developed, doctors would perform multiple surgeries in search of the source of a patient’s abdominal pain, leaving scars in the shape of a Tic-tac-toe game.
Different types of porphyria (and its misdiagnoses) have been featured on Discovery Health's Mystery Diagnosis, and on dramas like House, CSI, and ER. Patient stories have been covered in publications ranging from Ladies' Home Journal to online sports news outlets.  There are works of popular fiction and non-fiction about porphyria, notably Isabel Allende's memoir, Paula, written while the author’s daughter lay in a coma brought on by an acute attack.
The APF welcomes media attention to these fascinating and troubling diseases. If you are a member of the media, we hope you will use the information you find here in your stories, and we ask that you credit the American Porphyria Foundation as your source. We encourage you to share our website address, www.porphyriafoundation.com, and our toll-free telephone number, 1-866-APF-3635, with your audience as well.
Please call our office for additional information.

Porphyria in the Media

"Perplexing Pain," a mysterious case story of acute porphyria from the New York Times, Sunday Magazine November 1, 2009. (Page 1Page 2)
"Rare genetic disorder doesn't slow down boys," two brothers in a small Texas town deal with erythropoietic protoporphyria (EPP) from the Vernon Daily Record April 9, 2010. (12,3)
"The Mystery Illness" of Congenital Erythropoietic Protoporphyria (CEP) on Dr. Dean Edell's Medical Journal, ABC-TV 1986. (on genebennett.net)
Please contact us for a complete listing of print, radio and television features. 1-866-apf-3635


“Remember…..Research is the key to your cure!”


No comments:

Post a Comment

Acute Intermittent Porphyria strikes Claire Sadowniczak

Claire Sadowniczak Type of Porphyria:  Acute Intermittent Porphyria (AIP) Claire Sadowniczak of Orlando, Florida, is a member of th...