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
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.
Our researchers need people to volunteer for the Panhematin study. Completing this study will help prevent insurance companies from not paying for this treatment.
The purpose of this study is to determine if Panhematin is safe and effective for prevention of acute attacks of porphyria.
Please contact Edrin at the APF office (301.347.7166) if you are interested in participating.
EPP on Fox News - Thursday, August 2nd at 10pm!
Camp Sundown 2018 was extra special for our porphyria community - the first week was dedicated to children with EPP. Fox News caught wind of this special event and came to see what camp and living with photosensitivity is all about. Tune in tomorrow night - August 2nd - at 10pm to see the segment. The APF will have access after it airs and we will be sure to share with all of you.
Hearing Hoofbeats, Thinking Zebras
Click on the link below to view a story by our patient member Eryn Sallee. Thank you, Eryn, for sharing your story!
Please contact the APF on 866-APF-3635 to request information on these new clinical trials. There are seven study sites across the US that need your participation. Do you want a new treatment for EPP? – then come be part of the solution.
Remember…Research is the Key to Your Cure!! Every step along the way is important.
Harvoni Study - PCT
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.
Who can participate?
·Adult patients with PCT who also have Hepatitis C
If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.
Q & A WITH PORPHYRIA EXPERT, DR. BRUCE
WANG, UCSF The APF asked our Facebook friends for their top questions they
would ask a porphyria expert.
The following questions were submitted
to Dr. Wang for his responses ...
Q. Does EPP give us bad teeth? Also, do people with EPP
get stomach pains or is that with the other porphyias?
A. The porphyrin that accumulates in EPP patients is protoporphyrin
IX, which does not cause discoloration to teeth or abdominal pain.
The type of porphyria that leads to discolored teeth is Congenital
Erythropoietic Protoporphyria. The porphyrias that lead to episodic
abdominal pain attacks are the acute hepatic porphyrias.
Q. I have EPP and I have a severe reaction on my hands
and lips. Do I seek urgent care? Also, what can you even do
when you burn your lips?
A. The acute reactions to sunlight in EPP can be very severe and,
unfortunately, there are not many effective options to treat the
symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as