American Porphyria Foundation Purple Light Blog

September is Pain Awareness Month

The month of September has been declared Pain Awareness Month. Pain Awareness Month is a time when various organizations work to raise public awareness of issues in the area of pain and pain management. The first Pain Awareness Month was in 2001, when the ACPA led a coalition of groups to establish September as Pain Awareness Month. ACPA established Partners for Understanding Pain and 80 organizations, both health care professionals and consumer groups, including the NAACP supported the effort.
·Click below to learn about the history of Pain Awareness Month
http://www.theacpa.org/wp-content/uploads/2017/08/Pain_Awareness_Month_History.pdf The key to raising awareness is to get involved. There are many things that you can do to help promote Pain Awareness Month. ·Talk with Friends & Family: Let them know that September is Pain Awareness Month. “Like” the ACPA on Facebook. Encourage your friends to do the same. ·Talk with your Healthcare Provider: Let them…

What is your name? Jeannine Keith
Type of Porphyria? Hereditary Coproporphyria (HCP)
When & how long before you were diagnosed? I started having symptoms in March of 2010 and got my formal diagnosis June of 2010. In May of 2010 my Gastroenterology Dr. Peter Heit sent me for a urinalysis of the porphyrin levels in my body after I had every other organ tested with no answers to my pain. When the urinalysis can back positive he found me my savior Dr. Bari.
Who was able to diagnose you?Name/place? Dr. Fazal Bari, Oncology and Hematology Specialists
What has been your experience with porphyria? It is an unknowing disorder and can sneak up on you at any time day or night. I have had more good days than bad thankfully.
What symptoms do you have and how long do they last for? I have dealt with pain in my side, back, and chest. I have also had experienced nausea, neuropathy, and suffer from anxiety.
What treatment do you get?How often do you have to get treatment? Since 2010 I have been doing IV…

Last year in October 2017, Me and my fiance found out we were pregnant with our first child & we could not have been more excited. After waiting so long at 38 weeks our sweet little girl Harmoni Grace was here weighing 8 pounds 1 oz and twenty one and a half inches long.
A short few hours after Harmoni was born she had what the nurses thought was what they call a brick dust diaper, which is normal in babies just not nearly as dark as Harmonis was or the quantity.
We soon learned she was also born jaundice, so she was sent to the NICU to spend two days to help with the jaundice and to get to the bottom of the brick dust diaper. After two very long days and some testing doctors could not find anything wrong with Harmonis urine so we were cleared to head home.
As excited as we were to bring our baby girl home we just knew something wasn't right. For two whole months after that me and my fiance spent almost every day in Valley Children's Hospital trying to get to the bottom of a…

Porphyria Post
Volunteers Needed! The APF will be exhibiting at the two conventions this fall. Are you interested in volunteering at our booth? If so, please contact Edrin Williams, Director of Patient Services for additional information (edrinw@porphyriafoundation.org or 301.347.7166). This is an incredible opportunity to raise awareness about porphyria to those with little knowledge about this rare disease.
AASLD: San Francisco, CA • Sunday, November 11 – 9:30 am - 3:00 pm time slots available • Monday, November 12 – 9:30 am - 3:00 pm time slots available
ASH: San Diego, CA • Saturday, December 11:00 a.m. - 5:00 p.m. time slots available • Sunday, December 210:00 a.m. - 5:00 p.m. time slots available • Monday, December 310:00 a.m. - 2:00 p.m. time slots available
EPP Clinical Trials Are you ready to be a medical hero? A new clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP has begun. Don’t delay – contact the APF to learn more at 1-86…