Our New Medical Hero!Tara Cantley is one of the most recent patient volunteers to enroll in the Longitudinal Study, Panhematin Study and the Natural History Study of Acute Liver (Hepatic) Porphyria. The APF flew Tara down to the University of Texas Medical Branch in Galveston, TX to meet with one of the leading experts on porphyria, Dr. Karl Anderson. Tara is excited to be a part of the very important research studies and be able to make a difference and help others.Jessica from the APF was able to go down and visit with Tara while she was admitted to the UTMB hospital. They were able to chat for hours, after that Tara had finished her study requirements for the day. Jessica even had the unique opportunity to meet Dr. Anderson, along with one of Tara's wonderful nurses. Tara and Jessica enjoyed spending time together and it was a great experience for Jessica, who is new to the APF office. Tara understands how important the research studies are for both her and others affected by porphyria. She encourages others to volunteer and wants everyone to know: "Research is the key to our cure!" We would like to thank Tara and all patient volunteers for participating in the research studies!Become A Medical Hero!We have a chance to have a treatment to prevent attacks of acute porphyrias (AIP, HCP and VP). However, researchers need You. Without you, we cannot move forward to do research to get the new treatments approved. Safety studies have already been done. You are needed. You will be flown to the research center at No expense to you. You donate your blood and have an exam and fly back home. The first part of the study does NOT include a drug trial. During this part experts study you your attacks and your blood. Then the second part of the study is the drug trial.This study is extremely important to the understanding of porphyria, including why the pain associated with the disease is so severe, and why some people have symptoms and others don't.The porphyria research centers are in San Francisco, Birmingham, Galveston, New York City, Salt Lake City, and Wake Forest at University of NC.Become a medical hero. Please help us get a new treatment. Contact the APF office to learn more: 866.APF.3635."Remember....Research is the key to your cure!"
Wednesday, December 17, 2014
Our New Medical Hero! Tara Cantley
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...