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

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Alie Campbell VP

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