Tuesday, February 8, 2011

There was Fun, Too!!!

I wanted to include in the materials we were developing for doctors and patients the issues that were key to patients. So I interviewed many of them and asked them their thoughts on the subject. I would like to take a moment to share with you a few special patients who were in the Rockefeller Research program with me.

Herta was another extraordinary Porphyria patient at Rockefeller. When Herta arrived at the hospital, everyone knew it. She walked down the halls with a bigger than life personality. Everyone was a friend. Herta was vivacious, smart, interesting and had such a commanding presence that she drew instantaneous attention. I liked her and her husband, Herman, from the moment we met. Unfortunately, Herta was also very sick with Porphyria at times and often had to visit the outpatient clinic at the hospital.

Herman drove Herta into the city from New Jersey for her appointments. Since he was making the round-trip to and from the city, he took on the job of bringing urine samples from other New Jersey patients to the research lab at Rockefeller. You can imagine all the names we created for his automobile and his new volunteer service, our favorite of which was The PeeWee Delivery Service. Laughter , the Good Book says , is the best medicine and in this case it was definitely a major factor. The arrival of the PeeWee Delivery Service, was a much awaited event that precipitated howls of laughter each time. Plus, Herta and Herman transported more than urine when they came to the hospital. They brought overflowing love and if we were lucky, they also brought oodles of goodies that Herta had cooked. I never asked, however, if they kept the food and urine samples in the same ice chest.

Herta’s son, Roland, was producing videos at the time and approached me about filming a video on Porphyria. I jumped at the chance and assured him that we would distribute it through our new American Porphyria Foundation. After retrieving the specific permissions from the patients and doctors who were going to participate in the film, we finalized all of the other details before starting the video. Interestingly , the basics are still true today, so although we a new DVD , Porphyria Live, the older version is a treasure, too.

I was so impressed with Roland that I told him, "You are such a special young man that I think one day, you will be a producer on the Today Show or a similar program. Sure enough, not too many years later, he became one of the one of the Today Show producers and is still in television production.

Roland first set up the camera in the recreation room at Rockefeller Hospital. Most of the patients in the hospital gathered to watch the filming, whether they had Porphyria or not. I was the film’s narrator and Herta and Frank were the key patient interviews. They conversed about their respective cases of Porphyria and other men and women in the New York area who were patients at Rockefeller discussed the photosensitive Porphyrias. In years to come, we have tried to keep this as a prime feature at the APF, namely, working together, making what patients have to say very important , and soliciting the opinions of our members.

Our APF members are the reason we are a foundation. Since I don't take a salary and never have , I can say it is not for funding on my part. Also, our porphyria experts have very limited research funds and don't receive any funds for consultation with doctors or patients, so no one can say they benefit either. What we do is because we know pophyria is rare and many patients need help desperately.

Thus, we all need to help each other. Certainly, your donations help. But also it is helpful for you to do whatever you can to help educate your doctor , other patients and , of course, your community. You may ask , "How can I accomplish this? "

Let me give you a few suggestions:
Contact your local media and offer your story, particularly if it is National Porphyria Awareness Week or if there is a very exceptional angle to it . For example, near the 4th of July, you might suggest a story on pophyria because of the historical significance with Mad King George III and the Revolutionary War as historians feel that his ignoring the colonies was partly responsible for the British defeat. The APF will provide suggestions, materials and other help you may need to garner media attention to your story or to porphyria.

Another suggestion is to advance awareness of porphyria in the medical community. gain medical attention at your hospital , like a seminar at your hospital and teach your own doctor.

Watch the next blog to learn about King George and what he has to do with porphyria.

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Alie Campbell VP

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