Skip to main content

Porphyria Post



NICOLE'S CASTELLANO'S RUN FOR PORPHYRIA!


Nicole Castellano went from living her life as a competitive athletic World Champion figure skater....to coping with three near death experiences related to her Acute Intermittent Porphyria. With proper treatment and a specialized diet, Nicole bravely rebuilt her life and has moved from a wheelchair to training for her first marathon! 26.2 is a lot of miles and we wish her the best of luck every step of the way.

Please support Nicole as she prepares to race in the Chicago Marathon on October 8th, 2017. Each mile will be a reminder of all she has done to overcome living with AIP.  And every step of her run will support all who live Porphyria.

WATCH THE VIDEO HERE:

#TeamNicole
#PorphyriaStrong


EVER WONDER HOW SCENESSE WORKS TO TREAT EPP? HERE IS AN EXPERIMENT TO HELP EXPLAIN...

Dr. Jasmin Barman, a scientific advisor with the Swiss Society for Porphyria, created an experiment to simulate what happens when Scenesse is used to treat Erythropoietic Protoporphyria. In this video, Dr. Barman shows the experiment to APF member JT Von Seggern.  Here is what happens:

·    JT is holding a vial of protoporphyrin solution, the substance found in the blood of a person with EPP.
·    The blood of an EPPer glows, but that effect is only visible under a special microscope.
·    The protoporhyrin in the vial starts to glow when it is exposed to visible light. This is what happens inside the red blood cells of a patient with EPP. 
·    In the body, this results in second degree internal burns inside the veins.
·    In this experiment, a filter made of yellow cellophane is placed between a blue light and the protoporhyrin substance. The solution stops glowing!
·    The filter prevents the light from reaching the substance in the same way that Scenesse stops the sun from reaching blood.

Thank you to Dr. Barman and to JT for sharing this experiment with us to help explain the life-changing affect that Scenesse can have on a person living with EPP.  Dr. Barman created this experiment to help both children and adults understand EPP.

WATCH THE VIDEO HERE:



VOLUNTEERS NEEDED FOR THE AMERICAN SOCIETY OF HEMATOLOGY CONVENTION IN ATLANTA!

The American Porphyria Foundation will host an exhibit at the 59th ASH Annual Meeting and Exposition. The meeting is located in Atlanta, GA from December 9-12, 2017.  We are looking for volunteers to help host the exhibit - it will be prepared with furniture and educational materials.  Volunteers will need to represent the APF - and will be prepped in advance. Please contact Edrin at the APF office if you live in the area and are willing to help support us at this event. APF Office: 1-866-APF-3635


IMPORTANT:  EPP MEMBERS

"We need your help in our campaign to approve Scenesse."
If you or someone you know is in the EPP MEDICAL community (Doctor, RN, or Other Medical Professional) and HAS EPP to please contact Kristen at the APF. Contact her by email atKristen@porphyriafoundation.org  or give her call at 301.461.9889.


"Remember....Research is the key to your cure!"

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

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 ibup…