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Showing posts from March, 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 : ann…

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 reac…