Wednesday, March 23, 2011

Awareness Week/ Conference Call

Reminder ---Conference Call with an Expert

The APF will be hosting a Conference Call with a Porphyria Expert, Dr. Herbert Bonkovsky, who is renowned in the world of porphyria as a clinician and researcher. This is scheduled for Saturday, the 2nd of April, 2011. It will be from 1:00 eastern
until 3:00 p.m eastern time. This conference call is free to members of the APF and is $10 to all non members.
We encourage you to join, so as to benefit from a forum like this. Your support is
shown through the $40 suggested annual donation. To register, call the APF
TOLL FREE at (866) APF-3635 or (866) 273-3635. All wishing to participate
in the phone call must register prior to the conference call. Upon registering you
will receive dial in instructions.
After a short presentation about the porphyrias, Dr. Bonkovsky will field questions from the callers. If you are an APF member and for some reason you cannot be on the call, please send your questions to Annie Pangle at the APF :

The calle is free to APF members and $10.00 for nonmembers. We do encourage you to join the APF so that you can participate in the call for free but also help educate other patients and physicians, as well as support research and training future experts.

Listen for Radio Public Service Announcements on Porphyria
If you are a radio listener, listen for the Public Service Announcements (PSA) on porphyria. In connection with National Porphyria Awareness Week, Desiree Lyon Howe, Executive Director of the APF , was selected to tape a commercial encouraging people with unexplained abdominal pain to "Think Porphyria" and get tested.

APF members and National Porphyria Awareness Week

APF members are already working hard to promote porphyria awareness. Some are setting up medical seminars, grand rounds, hospital in-service, and other physician education programs. Others are approaching their local media to tell their own stories. For example, the Cooks in Texas are

Several of the television programs featuring porphyria recently aired. Within a 24 hour period, we received a rash of calls from people who thought that they might have the disease. In turn, the office sent them information on the disease and sent their doctor a packet on diagnosis and treatment. Hopefully, the television exposure was responsible for finding more people with porphyria and ending their cycle of pain and illness.

One woman who called mentioned her horrible bouts of abdominal pain, rapid pulse and "brownish /reddish/purple, tea like " urine. She went on to tell us that her doctors had given her almost every tests known to man and that she had been in the hospital more than home for the past year. After viewing a recent Medical Mysteries, she contacted her doctor and is being tested for AIP....The media is POWERFUL...

Your local media is often looking for a story, particularly around an event like Porphyria Awareness Week. You can use the local media to promote porphyria awareness by telling them about your own case. A number of APF members are participating with their local media to either film a daytime show or a newspaper article as part of Porphyria Awareness Week.

If you would like to receive materials for your event or media venue, please contact the APF.

Tuesday, March 1, 2011

About Sypmtoms.

As a review , my attacks continued intermittently for years, which made my doctors wonder even more about my illness. How could I be so sick one day and a week later be overcome with pain and illness. About 20 doctors later, I gave up. Fortunately, Dr. George Penton believed that I was ill and encouraged me to press forward to a diagnosis. He was further confused when his myriad of tests provided him with NOTHING upon which he could find a diagnosis.
To make matters worse, he gave me a dilantin , a "NO NO " for acute porphyrias. The dilantin caused me to have an attack so severe I was med evacuated me to the National Institutes of Health where I remained off and on for over two years. Then is when the idea of the APF was born in my heart and mind.
A gentleman from Illinois had the same idea , so we started the APF together. The two of were the first members and it has now grown to 4000 members, not withstanding the thousands of other potential patients who reached out to the APF for porphyria information.
Almost all of the people who contacted us had several major questions. First, how can I get diagnosed and where can I find a doctor to treat me. Although we hear those same questions almost 30 years later, we have educated thoussands and thousands of doctors. Even now they can take a free CME course of the acute pophyrias, they receive a very comprehensive kit about diagnosis and treatment , they receive info at targeted medical conventions and via the APF website .
The good news is that we have physicians as a primary focus of our educational programs and our board of experts are willing to consult with them and have been doing this gratis for 30 years. We thank them for this amazing and generous service and for their compassion for porphyria patients that would motivate them to do this for each of us.
We would like to hear your comments on finding a doctor with some knowledge of porphyria. Desiree

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)?

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)? ADP is more severe than the other acute porphyrias and can present in childhoo...