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Showing posts from August, 2013

NEW shipment of APF T-shirts are in get yours today!

The new shipment of APF T-shirts are here!

Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost. Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below. You can order a T-shirt and/or Porphyria Live DVD by sending an email order I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video. To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV-  I will accept money orders and personal checks.  You must have name/address/phone # on them.  …

8-2-13 EPP meeting and Afamelanotide/SCENESSE

August 2, 2013 was a memorable day for the APF members, who met at the FDA to explain Erythropoietic Protoporphyria (EPP) and ask that the FDA approve Afamelanotide/SCENESSE forEPP. Most of the attendees had participated in either the Phase II or Phase III clinical trials and were eager to elaborate on their positive experience on the drug.  We sincerely thank Florence Rollwagen, Diana Ijames, Mike Kenworthy, Steve Ferry, Pierre Mouledoux, Mike Ferry, and Andrew Turell, who spoke eloquently about EPP and its effect on their lives.  Each person presented unique aspects of dealing with EPP, as well as their experience with the treatment.  It was poignant to hear how a daily life of pain, isolation and anxiety was changed when they receivrd the implant.  Johnathan Turell, and Kristen Wheeden spoke about being parents of a loved one with EPP and shared the family dynamics that occur with the disease.
We also thank Desiree Lyon Howe, who arranged the meeting with the FDA and gave an overvie…

Diet Information for All Porphyrias

Diet Information for All Porphyrias
Nutritional Advice for Persons with Porphyria Herbert L. Bonkovsky, MD Jessy Philip, RD, PhD Carolinas Health Care System, Charlotte, NC Department of Medicine, Univ of CT Health Center and Univ of NC School of Medicine
Overview:  Good nutrition is important for all of us, including those with porphyria.  For the most part, persons with porphyria should follow the sensible and usual dietary advice of the Centers for Disease Control, the US Department of Agriculture, and other responsible and reputable governmental agencies. Because over-nutrition and obesity are such a great problem in the USA and other western countries, it is important that patients with porphyria do their best to avoid becoming obese or gaining weight beyond their ideal body weights.  The acute porphyrias [acute int…

CME Course

Continuing Medical Education (CME)  Physicians are required to have Annual Continuing Medical Education courses.  Fortunately, they have the opportunity to take this outstanding CME course about Acute Porphyrias and receive CME credit.  Please tell your doctor about this course which was offered last year and has been brought back by demand and is offered at the following link.  CME courses require registration but most physicians are already registered.

Acute Porphyrias: Recognition Through Follow-UpCME
Herbert L. Bonkovsky, MD; Manisha Balwani, MD, MS; Karl E. Anderson, MD; Brendan Martin McGuire, MD, MS Faculty and Disclosures.  CME Released: 01/19/2010; Reviewed and Renewed: 07/08/2013; Valid for credit through 07/08/2014
This activity is intended for hematologists, gastroenterologists, primary care physicians, emergency medicine physicians, obstetricians/gynecologists, and other healthcare professionals who may encounter patients with the acute porphyrias. The goal of this activity is…

Protecting Your Job While Coping With a Chronic Illness

Protecting Your Job While Coping With a Chronic Illness Dawn Villella for The New York Times Natasha Frechette, diagnosed with multiple sclerosis two years ago, has continued her job at Navigo Research in Brooklyn Park, Minn., with the help of an understanding boss and supportive colleagues. TWITTERLINKEDINSIGN IN TO E-MAILPRINTREPRINTS By LESLEY ALDERMAN Published: June 19, 2009
IT started with an odd sensation in her right hand and a feeling of exhaustion so profound she could hardly get through an hour of work, let alone a full day. MultimediaInteractive FeaturePatient Voices: Multiple Sclerosis Related Health Guide:

Attention: Important Announcement for AIP Study

Alnylam Pharmaceutical will begin research on their new treatmen, ALN-AS1,t for AIP in early 2014. The APF will be working with Alnylam locating patient volunteers etc. 
ALN-AS1 is a subcutaneous RNAi therapeutic targeting aminolevulinate synthase-1 (ALAS-1) for the treatment of acute intermittent porphyria (AIP), an ultra-rare genetic disease. ALN-AS1 has the potential to be a therapy for the treatment of acute porphyria attacks, as well as a prophylactic approach for the prevention of recurrent attacks. Our first meeting on the subject was very exciting. Plus , the scientists presented a n overrview of the reseach at the International Porphyria Conference I will be meeting again with them in Sept and will tell you all the details. Research volunteers will be needed . If you are interested, contact me as we are beginning a list now please call and contact Desiree Lyons 866-apf-3635.

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


Did you know: Symptoms of PCT

The most common symptoms of PCT are fragility and blistering of light-exposed areas of the skin—especially the backs of the hands, the lower arms and the face. Patients often report that their skin is unusually fragile, so small bumps or knocks can scrape away the upper layer of the skin or cause a blister. The blisters contain fluid, rupture easily, crust over and then heal slowly. Skin infections, scarring and changes in coloration may result. Small white spots called "milia" are commonly found on the hands and fingers.

Another feature which is often seen is excessive growth of facial hair. The reason for this is not at present understood, but once the disease is under control, the hair can usually be easily and effectively removed by conventional methods. Some patients develop severe scarring and thickening of the skin, which is referred to as "pseudoscleroderma".

PCT is accompanied by some degree of liver damage. This is often mild or…

Please Support the American Porphyria Foundation- We need your help.

Support the American Porphyria Foundation

Please support  the American Porphyria Foundation today. When you support the APF, you are making a contribution to an organization that provides solid medical information, hope and essential support to those affected by porphyria. You can be proud to be an integral part of the help we provide patients on the road accurate diagnosis, proper care, and hopefully someday a cure.

We welcome donations by phone, mail, fax, or online. Please call us with toll free at 1-866-APF-3635 Monday-Friday from 9:00 a.m. to 4:00 p.m. CST. We accept VISA or Mastercard. You may choose to honor a friend or loved one with your donation, or to remember someone with a memorial gift.   You can give online with a major credit card via PayPal: Or you can click here to fill out and print a donation form, which you may fax or mail to our office:

American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056
Matching Gifts
Many companies offer matching gift progra…

Mobile Web App for Safe/Unsafe Drug List

Mobile Web App for Safe/Unsafe Drug List
We sincerely appreciate the hard work of APF member, Mr. Nicholas Frias , who designed a fantastic Mobile Web App for the Safe/Unsafe Drug List for the Acute Porphyrias.  He combined the APF list and the European and South African lists to create an easy to search list.
This Mobile Web App is very simple to use.   All you need to do is enter into your mobile device web browser to access it.  Follow easy instructions to add the list to your home screen.

  The desktop version works well, too.  Mr. Frias will be updating the list with the assistance of porphyria expert, Dr. Peter Tishler.  There is a comment section to track glitches in the system, so please feel free to add your comments, as Mr. Frias will continue to update the site.​ This is a very special gift from Mr. Frias to people who have one of the acute porphyrias.  Please join the APF in sending him our sincerest thanks.
"Remember....Research is the key to your cure…

For Healthcare Professionals

For Healthcare Professionals
This section of the website includes more detailed information about the three most common types of Porphyria: AIP (and the clinically similar HCP, VP & ADP), EPP and PCT. For more general information, please see the About Porphyria section of the site. A more in depth discussion of diagnostic issues in the porphyrias can be found in the Testing and Treatment section of our website. You will also find one free, online Continuing Medical Education course on the acute porphyrias, and a Powerpoint presentation on the porphyrias. You may also call our officeto order a copy of our free physician education packet. Clinicians and researchers specializing in Porphyria are available to consult on suspected or confirmed cases of Porphyria, and to discuss the individual course of treatment. Some specialists can assist with diagnostic testing, and some are available for clinical consultation with patients. There is one telemedicine facility for Porphyria consultatio…

APF Newsletter's Past and Present

Please be sure to take so time to read about the American Porphyria Foundation's Newsletters!  You can read about Dr. Info expert advice, suggestions, member stories tips on all the types of Porphyria.  Click on this link:

     If you would love to receive the newsletter in your mailbox please check out how you can become a member today.  Contact Yvette @ the American Porphyria Foundation @ 866-APF-3635 or email her today @

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

Read about our new APF FB Admin Pierre Mouledoux

We would love to welcome out new FB Admin to the EPP,CEP group Pierre Mouledoux.
I asked Pierre a few questions so that we could all get to know about him & his family.  His background is very interesting and also how he has been able to support the
American Porphyria Foundation.  Thank you for opening up Pierre and I hope everyone enjoys reading this.
Pierre Mouledoux is a licensed real estate agent and the project manager for Sperry Van Ness/Gilmore Auction & Realty Co. in New Orleans. Pierre recently received his Notary commission after successfully passing the Notary examination. He currently serves as State Publicity Chairman for Louisiana Ducks Unlimited State Committee, and is a member of both the Jefferson Parish Ducks Unlimited and New Orleans Ducks Unlimited Committees. Pierre and his darling wife Alyse are expecting their first child due in January 2014. He is also an 2003 Eagle Scout of Troop 230 in Metairie, LA.
Having EPP severely limited his passion for the outdoo…

Please read Urgent 4.5 million grant for Porphyria How you can get involved.

The Porphyria Research Consortium has a an excellent chance at winning a $4.5 million research grant but YOU are needed. Unless we can locate enough research patients there can be no research trials. These projects are different than others. All that is required of YOU is to donate some of YOUR blood, swab YOUR cheeks for DNA and answer a questionnaire. There are seven studies in which you can choose to participate. Please contact Hetanshi Naik at or the APF. 
To be eligible for the Longitudinal Study of the Porphyrias:
Must have a confirmed diagnosis of one of the porphyrias
It is preferable if patients are able to come to a participating center to be clinically evaluated (through insurance if possible)
If patients cannot come to a center they can be seen by a local physician and have their records sent to a participating center along with the necessary samples (DNA, porphyria labs, etc)
To participate in the following studies the patient MUST already be in the Long…